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Wednesday, December 30, 2009 3:12 PM CST
Wednesday, December 30, 2009 3:02 PM CST
Hello Everyone!
Just wanted to add a quick entry to say Happy New Year! Lyrissa, Nicholas, & Noah had a great Christmas, with lots of toys, games, you name it! It is so wonderful to see happiness in them!
The latest on Roo is that she is getting glasses! It seems the little rascal has had touble with her vision close up and squints a lot. So she picked out a real cute pink Barbie pair which she'll have soon.
She is also due for a re-check of her labs to keep an eye on that liver enzyme which was slightly elevated in the fall.
Thanks to so many who continue to keep in touch with us and check in on the site.
Please look for an entry soon in January as we celebrate Lyrissa's five-year-from-diagnosis date! Please keep Roo in your prayers for a healthy 2010, and we wish all our friends and family the same! Happy New year! Margi
Wednesday, December 30, 2009 3:02 PM CST
Hello Everyone!
Just wanted to add a quick entry to say Happy New Year! Lyrissa, Nicholas, & Noah had a great Christmas, with lots of toys, games, you name it! It is so wonderful to see happiness in them!
The latest on Roo is that she is getting glasses! It seems the little rascal has had touble with her vision close up and squints a lot. So she picked out a real cute pink Barbie pair which she'll have soon.
She is also due for a re-check of her labs to keep an eye on that liver enzyme which was slightly elevated in the fall.
Thanks to so many who continue to keep in touch with us and check in on the site.
Please look for an entry soon in January as we celebrate Lyrissa's five-year-from-diagnosis date! Please keep Roo in your prayers for a healthy 2010, and we wish all our friends and family the same! Thank You! :) Margi
Thursday, November 5, 2009 2:47 PM CST
Hello Everyone!
Roo's new magic buttons are working wonderfully! They have a little volume control so it's easier for her to adjust them to allow for different situations. We are really lucky and blessed to have them.
Lyrissa is doing well. She still struggles with hearing and sometimes is "lost" because of it, but she seems to handle it well.
Baby Noah is so cute right now. SO hard to believe he is the exact same age that Roo was when she was diagnosed. I remember her being so much like he is now, happy, playful, innocent....Her personality prior to her illness was exactly that of Noah. Nicholas was a litte more reserved at that age, probably because he had no interaction with other children. But Noah's actions (running away from you naked when it's bath time, etc), are so similar to the way Roo was!
I had a conference with Roo's teacher, and she says Roo is doing great. She is still extremely reserved, rarely smiles, and avoids interaction with adults. But, the strange thing is, kids seem to love her and she has lots of friends (thank God!) She's included in things and appears to me to be fairly content with life, so I'll take that... :)
I fixed the pictures on the site! (I think!)
Thanks for checking in!
Saturday, October 10, 2009 6:41 PM CDT
Hello Everyone -
We are headed down to AL to get Roo's new magic buttons this week! The kids are so excited.
Lyrissa had her ECHO and EKG yesterday and they got their flu shots. Her bone marrow doctor wants her to have the swine flu vaccine too eventually...
School is going great for them.. Nicholas colored a religious picture the other day and brought it home. He handed it to me and said, "It's supposed to be for Jesus but I'm giving it to you!" LOL
Today we went on a hayride and picked our pumpkins after Nicholas had his soccer game. We are going to Kent Island to meet up with our friends Denise and Shane at the end of the month and I can't wait to see them.
Lyrissa is still doing great. She is loving gymnastics and is now a Daisy Scout! :) One of her favorite things is arts and crafts, so I am entering her art into two art contests ( I know, I am an annoying mom! :) )
CHECK OUT THE NEW PHOTOS I UPLOADED! For those of you who may remember when Nicholas was a baby and I had the pic of him attempting to swing from the chandelier..well, guess what..yup, Noah does the same thing!! And I have a great photo of him I will upload soon!
Thanks for checking in..
Friday, September 11, 2009 1:48 PM CDT
Hello Everyone!
September is Childhood Cancer Awareness Month! Unfortunately, a schedule conflict won't allow us to participate in this year's Curesearch Walk. :(
The summer flew by so fast, and school has already begun. Lyrissa started first grade and Nicholas is in Pre-K. Hard to believe! They both are doing great; I have some good pictures; I have to get them up on the site.
We had a great trip to Alabama to see my sister, and Lyrissa & Nicholas had a ball with their cousins. Lyrissa just loves to be around them, probably because they are "big girls." We also took a brief weekend trip to Dutch Wonderland with another family and the kids had a great time.
In late August, we went up to A.I. for a check-up with oncology. Lyrissa was seen by the nurse practioner now, and she had labs done. No scans! Yay! All of her labs came back normal, except for one liver enzyme which was slightly elevated. They are just going to watch it and re-test in six months. I had to reschedule her EKG and ECHO for October 9.
On 9/8 we went to CHOP to see her transplant doctor, Dr. Grupp. Dr. Grupp can't believe how good Lyrissa looks. He even referred to her recovery from everything as a "miracle." That was amazing to actually hear a doctor use that word. It is a wonderful feeling, too, because being at CHOP, it's hard to forget all of the horrible pain and suffering Lyrissa had to endure. There were so many instances of pure agony, many I was never able to write about or share with anyone. No matter how great things are now, you can never get images out of your mind when you have seen your child suffer such indignities and immense pain. Thank God, Lyrissa has no real memories of it, but it did affect her deeply, I know that. Watching happy Baby Noah reminds me of how Roo was before neuroblastoma, and it brings back great memories of how things were before she got sick. I am SO grateful Lyrissa is my daughter, and so incredibly happy to have her where she is today.
Anyway, we are actually headed BACK to Alabama, for a wonderful reason. My sister has a friend who is a hearing specialist. He took molds of Roo's ears, and is making her a custom set of hearing aids which will go right in, rather than over, her ears! What a gift! Normally they won't make those for children because their ears grow so fast that it is not practical financially. But this wonderful person is giving them to Lyrissa free of charge. We are really appreciative of that generousity.
Well, other than her ECHO and EKG, and having to be re-immunized (OUCH!), Lyrissa doesn't have to see oncology for another year! She will then be followed by a late-effects team! Wow. January 5th will be her five-year-from-diagnosis date - I am so excited!! More soon...after we get her new magic buttons!!
Thank you to everyone for checking in, and continuing to care about Lyrissa.
Friday, June 26, 2009 9:38 AM CDT
Hello Everyone!
Well, we're back from an awesome vacation at Beaches Turks & Caicos. It was totally beautiful, relaxing, and fun! They have so many activities for the kids to do (even the baby) so Greg and I could do a lot of things together as well. Sesame Street sponsors it, so the kids did all sorts of things with the characters. I have uploaded a few of the pictures to her slideshow.
It's wonderful to see Lyrissa enjoy herself. It never gets old. I am so glad she is able to laugh, play, have fun, and "be a kid!" (Check out the photo of her jumping...amazing when I think how far she's come).
Lyrissa was supposed to go to CHOP in mid-July, but they called and rescheduled it until 9/8. She has to go up to A.I. in August to see oncology, and also I have to schedule her echo and EKG.
Lyrissa may attend Kay's Kamp for one week. It is a new camp here in Delaware, created out of a wish that Kaylyn Warren had prior to her death last year from leukemia, at age 17. It is for any child who has had cancer, no matter what their circumstances are now. It sounds like a lot of fun, and because it is so close, I could pick Roo up daily, rather that have her do overnights. I will update more on that. They have also asked Lyrissa to ride a float in a Fourth of July parade.
In late May our family participated in the first annual "Hear We Go" walk to benefit children with heaing loss. It was on the beautiful Nemours grounds, adjacent to A.I. The walk was great, but we held Daddy back from getting to run like he's used to! :) We cramped his style - haha.
So far, the summer is going great. I will update more in the next few weeks, as I am trying to plan Lyrissa, Nicholas', and my trip to see their cousins Joy & Callie in Alabama. Hopefully, I'll have some good pics from that trip.
Friday, May 29, 2009 1:58 PM CDT
Hello Everyone -
Happy Spring/Summer -
Well as you can see from the time between updates, we've been busy! Lyrissa is doing fabulous. The tubes in her ears went well back in April. She got another ear infection since, but we only had to use drops to treat it. Her "magic buttons" make things a little harder because they trap water in there. I am in the process of exploring new magic buttons for Roo; ones that are a little smaller and less bulky. They have a lot of new things out there now.
We didn't see Dr. Grupp up at CHOP as planned in April. We are now scheduled for July 14, and I will promise to update after that. Lyrissa has to get her EKG and ECHO this summer as well, along with meeting with Dr. Griffin.
Lyrissa has been back in full swing with gymnastics and loving it! Nicholas is playing soccer and running his little heart out! Finally Baby Noah is walking around and already getting into things! All three walked late, with Roo taking the longest to get moving!
Last weekend we had a very special visit from Auntie C and Joy and Callie, Lyrissa's cousins. Lyrissa had so much fun and was SO sad to see them go. She sobbed and sobbed which is not like Roo. SO we made her a special promise that she can go see them at their house in July. That is AFTER the BIG surprise for mommie's birthday - a week in June to the Carribbean! We can't wait..all kids are going to Beaches Turks & Caicos as well, and we can't wait to have some fun with each other and watch the kids have the time of their lives!
Lyrissa is wrapping up her year as a kindergartener! I can't believe it! She can't wait to spend her summer at the pool - that's all she talks about. I am also exploring an art camp for her for a week or two because after gymnastics, that is her favorite thing. So hopefully Lyrissa, Nicholas, and Noah will have a real nice relaxing summer and be ready for school in the fall. Nicholas is going to be in PRE-K at Roo's school and he is very excited to be a big boy.
After we get back from vacation I will hopefully have some pictures to post and update about CHOP as well. (As for the slideshow on this site, somehow I lost the song that was on there. If anyone has any suggestions on fixing it, let me know)
Next week I am going on a field trip with Lyrissa to the Salisbury Zoo; what a pure blessing to have her in my life!
Thank you for checking in. Please continue to pray for Roo's health.
Tuesday, March 24, 2009 8:03 PM CDT
HAPPY 6TH BIRTHDAY LYRISSA!
Today Roo is six! She had a great birthday party and a great day today!
Update on Roo healthwise: Lyrissa has had a lot of bad ear infections, so she is now scheduled to get tubes in her ears on April 23. It will help a lot because Roo needs every bit of hearing she has left, and the fluid from the ear infections was just making a bad situation worse.
On April 14, Lyrissa is going up to CHOP for her annual meeting with her bone marrow doctor, Dr. Grupp. We hope he gives her a clean bill of health, so I will update her page after that.
The great news is that the wonderful gift of the FM system from Angel Michael's family is now up and running! Lyrissa has been using it at school for about a week now, and it seems to be running smoothly. It is amazing when I use it at home. It makes it so much easier for her and me to communicate, especially in situations like in the car or a store. When she saw the ENT up at A.I. last week, they also did another hearing test, at which time I learned that her hearing is worse than before. So thankfully, we have her FM system now and we're very blessed to have it.
Nicholas had a great 4th birthday on March 17, and how can you go wrong with a Spiderman birthday party? (Well, the place where we had it managed to figure out how..BUT..that's another story...:) Anyway, the poor little guy has been battling a bad virus the last couple days and the baby is keeping up with him with an ear infection in each ear!
We got a very special gift from an awesome cake decorator/baker, Meredith, who made Lyrissa an unbelievable princess cake, complete with her picture in a frame on the top. The picture is one from Disney Make a Wish when she was made into a princess. Check it out on the 'View Photos' link here (I think I got it into the slideshow as well). Many thanks to Meredith; you will never know how special that was!
No news yet on Lyrissa's prior urine test that Dr. Griffin was supposed to decide on. We'll just wait and see, I guess.I will update after her CHOP visit and surgery for her tubes.
Happy Birthday Sweet Roo..thank you for a totally awesome six years! I pray for sooo many more! I love you forever...:)
Friday, February 27, 2009 3:12 PM CST
Hello Everyone -
Let me know how you like the way I've set up Roo's pics!
I am happy to report that all of her scans are negative! The only problem was the HVA/VMA urine which is still showing elevated levels of that enzyme. Dr. Griffin called and told me they are going to try and use the lab at DC Children's Hospital that they used before, rather than the lab at the Mayo Clinic which is more sensitive. So, I guess we'll see...I'll keep you posted.
Roo still has to have an echo and EKG, but he says she can wait until school is out for summer. She'll have to have those every year.
We have to go up to CHOP soon for our annual appt. with Roo's transplant doctor, Dr. Grupp. If any of our nurses are reading this, we would love to see you, especially Jess and Aimee.
Roo is gearing up for her big princess birthday party in March. Can you beliieve that Roo will be 6? Nicholas is having a Spiderman birthday party the week before that, so we'll be busy. I will post some pictures.
Well, everyone is getting over a virus that swept through our house! UGH!! Even Greg, who manages to dodge almost everything, got sick! Half of Lyrissa's class has been out, so I take comfort knowing that her symptoms (fever, etc.) are "normal."
I will update in late March with photos of their birthdays. Please pray that Roo's urine test is nothing more than a fluke, and that her scans tell the real story...she continues to thrive and make me proud every day!!
Thanks
P.S. How could I forget?! Happy Birthday to Roo's daddy today!!
Friday, February 6, 2009 1:24 PM CST
Hi Everyone!
First of all - Happy 1st Birthday to Noah! He turned one year old yesterday. Boy, that year sure flew by! He is doing great, a little butterball full of love who loves to snuggle and laugh. He is crazy about his big brother and sister.
To update on Lyrissa: Her MIBG was negative! Hooray! For various reasons her CAT scan had to be rescheduled until February 13. Her urine came back with elvated levels of HVA/VMA. Some of you may remember we've been through this before. In December of 2005, this happened and we restricted her diet, eliminating orange juice and bananas which can affect the test. It was then normal. So we're going to try that again and repeat the test on 2/13. (HVA/VMA is a hormone that can be elevated in kids with neuroblastoma).
We met with Dr. Griffin, who says that provided that all her scans and labs are good, we don't have to do anymore scans! I can't quite celebrate that yet; once I get the urine and CAT scan results, I can. Even still, I will never completely relax because neuroblastoma can be so bad...I will never dare to think I can "predict" it. BUT, her being NED forever is a great thing to hope for!
January was probably the busiest month we have ever had. It had planned to be busy from the begining, but then we got thrown a couple of curve balls - Baby Noah was hospitalized for three days with pneumonia, then both the kids and I got stomach flus, (lucky me, got in TWICE), and then an ear infection for the baby, along with a couple snow days, requiring re-scheduling things, then I made a quick trip to Connecticut to see my grandma, etc. So hopefully February will be a little bit better.
When we went to A.I., despite the unpleasantness of it all, (Roo had to get really bad ouchies in her hand and for the first time in years she shed some tears quietly while laying still, which then proceeded to roll down her face, and collect in her hearing aids, which was a painful reminder of the ugliness of this disease), we managed to make it fun. I love hanging out with Roo. I love my little guys too, but I can't deny how special my Roo is to me! :) Anyway, we visited our former nurses on 3A! It was so great to see Amy, Irna, Mary, Candace and Ben! We have such a special place in our heart for them. We also got to see our awesome social worker, Dale, who, without her I probably would have been kicked out of both A.I. and CHOP....LOL
January 5 was four years from Lyrissa's diagnosis; we put up our angel tree. For us it's a day of celbration - one more glorious year with our Roo!
A.I. brings back sad memories, but good ones too, because I really got to see the good in people there. Roo has no memory of being inpatient, which is good, but I tell her about the things that we did to make the time pass. BRAGGING ALERT: Roo is so good at art and reading now, and I swear it's because for months that's all we did. (Well that and watching Barney, whom I am avoiding introducing to Noah! Ha ha.
Please look for an update in a few weeks after her CAT scan and repeat urine. Please pray that her urine is just a fluke and her CAT scan is normal. Even little abnormalities which may be "normal" in a CAT scan would have to be investigated, so I really hope it is all clear. Thanks for checking in.
P.S. I have some good pics of the baby smashing his birthday cake in his face. I will post soon.
Tuesday, December 23, 2008 2:21 PM CST
Hello Everyone
Just a brief update...Lyrissa is scheduled for scans on 1/21 and 1/22 and doctor's visit with labs on 1/26. PLEASE continue to keep Lyrissa in your thoughts and prayers for her to remain disease-free forever!
We got a very special early holiday blessing. You may remember me talking about little hero Michael, who became an angel last summer, after battling neuroblastoma for several years. We were in transplant with him at CHOP. His mom, Kelly, contacted me and offered to me Michael's FM system. Can you believe that generousity? I think that was the best gift I have ever received and I was blown away by her kindness. Lyrissa's audiologist took it to check it out, and just today I learned that it is indeed compatible with her hearing aids. I am so honored to have it, and it is so special. Thank you Kelly!
In the meantime, the wonderful people at Lyrissa's school were also pursuing various avenues and giving me references, so I am most grateful to them as well for their attitude toward making Lyrissa's life and learning easier. Thank you!
On December 6, Lyrissa received a very special blessing/annointing by a priest, which was also arranged by a friend we met through school here who has turned into a great friend. Theirs is a family who truly "lives" their religion; not just talks it. Thank you!
I recently mentioned to Lyrissa's soccer coach's wife, about the hoops we were having to jump thru to get a street sign for our road that says "Slow - Hearing Impaired Child." (Our road is a very busy one, which is used as a "cut-thru" to and from a shopping center). Well, by virtue of her job, she made a phone call, and - voila - it has been ordered! How awesome is that?! So, as you can see, we have had several early Christmas presents given to us by various angels here on earth! Thank you!
Lyrissa, Nicholas, and Noah are doing well and very excited for a special visitor who is supposed to come by the night of December 24! :)
I will update the first week of January. Please pray for Lyrissa's scans.
MERRY CHRISTMAS & HAPPY NEW YEAR
Tuesday, November 4, 2008 1:37 PM CST
Hello Everyone & Happy November
Well, our Walk was a success! We surpassed (I think even doubled) our fundraising goal! Thanks to all who participated, donated, and attended. It was the first walk Curesearch has done in Delaware, and it was really nice. We had beautiful weather for it, as well.
I atteneded the seminar on the late effects of childhood cancer. It was both informative, yet sad, too. It brought back a lot of sad memories of the pain and suffering Lyrissa has had to endure. But also reminded me how lucky I am to even have the "worry" of late effects. So many would love to have that concern, and I think of those families all the time.
On Halloween night Lyrissa got a visit from a special someone - The Tooth Fairy! She came to our house for the third time now! Go Roo! It's so cute; I have two kids with new teeth coming in - Lyrissa and the baby!
Kindergarten continues to go well for Lyrissa! I LOVE it because Lyrissa seems genuinely happy to be there. I had a conference with her teacher, who informed me that she is doing wonderfully! She seems to be right on track, which is amazing given all that she's been through. I thank God for every minute of every day with her!
We are definitely getting an FM system (eventually, we are working some things out now) but her teacher is completely on board with it. That is such a blessing because in a private school system, they really aren't mandated to follow certain federal laws with regard to accomodating kids in that area. We have met with zero resistance on the part of her teacher, and I am so incredibly grateful for that. Anyway, even though she appears to be learning well and catching on, children like Roo can become very fatigued trying all day to hear, and that is why an FM system is so important.
Well, Lyrissa, Nicholas, and Noah are getting a Thanksgiving visit from their Ga and Pop, so they are very excited about that. I will update on the FM system. Check out the new pictures!
Tuesday, October 14, 2008 4:12 PM CDT
Hello & Happy Fall!
We are so excited to be getting ready for the Curesearch Milestones Walk for Childhood Cancer this Saturday, October 18th. We have reached our goal! Check out our team page:
http://host.curesearch.org/site/TR/Walk/General?team_id=3391&pg=team&fr_id=1140&et=xrx3NkjtO-_BjFN9IS28ow..&s_tafId=2970
Thanks to everyone's generousity and contributions! We have met so many wonderful people from Lyrissa's school who have gotten on the bandwagon for the Walk. Thank you! We got tee shirts for our walk and the Loockerman Exchange Restaurant & Nightclub is partially sponsoring us.
Lyrissa is loving kindergarten! She absolutely thrives on the routine and structure; it's so good for her I think. Recently, Lyrissa and Nicholas have been snooping around several pumpkin patches down here to find the perfect pumpkin! Even the baby rode on a hayride. :)
Well, I have two little Superheroes for Halloween! Lyrissa found a pink Supergirl costume and Nicholas is Batman. Well, guess who's Baby Spiderman?
Soccer is going great...practice, that is. Lyrissa loves to practice soccer, but the games are a different story. While she gets out there and doesn't protest, she refuses to run or interact with the ball at all! It's too funny. She stands out there examining her nails, playing with her hair, fixing her uniform, or even dancing a little bit! She has already informed me that she is not playing soccer again! So I guess Nicholas and Noah are my only hope! :)
Lyrissa saw her audiologist on 10/10...her one magic button is on its last leg, so now she has a loaner, but it's not pink! Lyrissa doesn't care, she just puts it in and keeps going! Her audiologist is really pushing an FM system for her, so her teacher can wear it and it will help eliminate all of the obstacles to learning in the classroom, such as background noise, etc. In the meantime, she is going to get magic buttons that are a little smaller. Thankfully, Greg's insurance now partially will cover hearing aids, so we will get some help in that area!!
On November 1, A.I. DuPont is hosting a seminar about the late effects of childhood cancer. It sounds like it is going to be very interesting..I am looking forward to attending.
I am not sure about Lyrissa's scan schedule/testing..but I am sure that it will be coming up fairly soon. Please continue to keep Roo in your prayers to be free of disease forever..she is such a gift to me..I pinch myself for all the great days we have together. Please think about joining us for the Walk on 10/18...you can just show up or email me at nonily@verizon.net for more info. Team 'Love From Lyrissa' would love to have you join us!
Stay tuned for pictures from the Walk!
Wednesday, September 10, 2008 3:10 PM CDT
Hello Everyone!
September is Childhood Cancer Awareness Month! Please keep all the families in your minds or prayers this month. If you have the opportunity, buy something that supports Alex's Lemonade Stand, give blood, whatever you can do in some small way can hopefully make a difference. I feel so bad for all of the families who are finding out this week, this month, this year, that their precious little "healthy" child has cancer. It is a terrifying nightmare and NO ONE should have to live it.
We are going to walk in the Milestones Walk through Curesearch, on October 18. Please click on the link below to see our page or join our team, which is called "Love FROM Lyrissa." We would love to have you join us if you can!
Well, Lyrissa made it kindergarten on 9/2! She did wonderfully; I am so proud of her! The teacher said she will work with us on Roo's hearing, that is, possibly wearing an FM system which then transmits into somthing Lyrissa will wear. We are still exploring that.
I am posting this poem found on another site in thinking about childhood cancer. Please say a prayer for all families affected by this terrible disease.
"I Hope You Never"
I hope you never have to hear the words, 'Your child has cancer.'
I hope you never have to hear, 'the prognosis is not good'.
I hope you never have to prepare to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles, as they look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'
I hope you never have to hold your child as they vomit green bile,
I hope you never have to feed them ice chips for lunch,
I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they, lose their hair, become skeletal, swell up from steroids, develop severe acne, become barely or unable to walk or move, and look at you with hope in their eyes and say, 'It's going to be okay, Mommy.'
I hope you never have to stay in the hospital for weeks, months or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.
I hope you never have to watch a family wandering aimlessly, minutes after their child's body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.
I hope you never have to see a child's head bolted to a table as they receive radiation.
I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.
And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'
I hope you never have to face the few friends that have stuck by you and hear them say, 'Thank God, that is over with,' ...because you know it never will be. Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'. While living in mind-numbing fear that any one of these tests could result in hearing the dreaded words... 'The cancer has returned' or 'the tumor is growing'.
And your friends become even fewer.
I hope you never have to experience any of these things,
Because...only then...
Will you understand....
Written by: Carol Baan .
CHECK OUT THE NEW PICS OF ROO ON HER FIRST DAY OF KINDERGARTEN
Links to the personal and team page for the Walk:
http://host.curesearch.org/site/TR/Walk/General?px=1094203&pg=personal&fr_id=1140&et=yd-EQn5PlKtFyfTy0paPZg..&s_tafId=2970
http://host.curesearch.org/site/TR/Walk/General?team_id=3391&pg=team&fr_id=1140&et=xrx3NkjtO-_BjFN9IS28ow..&s_tafId=2970
Tuesday, August 19, 2008 8:36 AM CDT
Hello Everyone!
Lyrissa had a CAT scan on Friday, 8/15, and I am happy to report that the radiologist told me preliminarily that it was good! Yay! Lyrissa still continues to amaze me with her strength and attitude. She is totally compliant with the IV placement and never complains or fusses. Of course, after the scan, I spoil her endlessly! :)
Lyrissa is very excited to start kindergarten on 9/2. She is going to a Catholic school here near our home, at our church. She is excited to wear her uniforms and meet new friends. She has been coming to church for about a year now, so she will be familiar with some of the things.
We are going to the beach next week. When we come back, Roo meets with a new audiologist, and gets her magic buttons all squared away for school.
Roo has lost yet another tooth! This time the Tooth Fairy gave her five quarters! Wow...go Roo!
Gymnastics ended yesterday, and Lyrissa is scheduled to start soccer on 9/6. She says she wants to play, so we'll see...
I plan to update more in the coming weeks with all of her back-to-school excitement. Can you imagine how happy I am to see Roo beginning kindergarten???
In the meantime, CHECK OUT THE NEW PHOTOS! Baby is growing like a weed! :)
Wednesday, July 2, 2008 9:57 AM CDT
Hello Everyone - Happy July!
Lyrissa, Nicholas, and Baby Noah just got back from a few fun-filled days in Lancaster. They visited Dutch Wonderland, played in the pool, and thoroughly enjoyed themselves! Baby Noah is a trooper. When Nicholas was the same age that Noah is now, his days were spent in a darkened hospital room up at CHOP for two months, so it is a blessing to be able to have baby Noah be out and about enjoying life with us!
We sadly learned that yet another friend who was in transplant with us, Michael from PA, became an angel in late June. Too many kids we met from CHOP have lost their lives to this terrible disease. Our friend Trevor, also from PA, passed in March of last year. I pray daily that we see a cure in our lifetime.
We have an appt with Roo's oncologist, Dr. Griffin, on July 11, at which time she'll also have labs drawn. Then I know for August, it will be our dreaded scan time! UGH! I will update with her scan schedule as soon as I know it. Please keep Lyrissa in thought and prayer for clear scans. The fear never goes away, and the stress remains a challenge.
As far as Nicholas and baby Noah, they're doing great. But poor Noah is having coughing and wheezing issues and is now using a nebulizer. Nicholas is almost 100 percent potty trained; it's about time! :)
I forgot to mention that Roo is still loving gymnastics, and performed in her "show" several weeks ago. She is now enrolled for summer as well, and Nicholas is in the class with her. He loves it. A great big room, where he can run, jump, and hang from things! What could be better?
We'll be headed to the beach next month but I'll try to get her scans done prior to that. Thank you to all who continue to check in on Roo and sign her guestbook, and follow her progress. Please keep Michael's family in your prayers, and appreciate even the little things with your kids!
Oh, and how could I forget? Congratualtions to Baby Noah who was baptized on May 25! :)
Tuesday, May 20, 2008 12:09 AM CDT
SOME EXCITING NEWS IN THE WORLD OF NEUROBLASTOMA
This is great news and one step further towards a cure! And to think Roo was treated at the very hospital where they made these discoveries...
Read article below:
Researchers Find Gene Location That Gives Rise to Neuroblastoma, an Aggressive Childhood Cancer
--First Finding of Origin of a Puzzling Pediatric Tumor--
PHILADELPHIA, May 7 /PRNewswire-USNewswire/ -- Using advanced gene-hunting technology, an international team of researchers has for the first time identified a chromosome region that is the source of genetic events that give rise to neuroblastoma, an often fatal childhood cancer.
The investigators found that the presence of common DNA variations in a region of chromosome 6 raises the risk that a child will develop a particularly aggressive form of neuroblastoma, a cancer of the peripheral nervous system that usually appears as a solid tumor in the chest or abdomen. Neuroblastoma accounts for 7 percent of all childhood cancers, but due to its aggressive nature, causes 15 percent of all childhood cancer
deaths.
"Until now we had very few clues as to what causes neuroblastoma," said pediatric oncologist John M. Maris, M.D., who led the study at The Children's Hospital of Philadelphia, where he is the director of the Center for Childhood Cancer Research. "Although there is much work to be done," added Maris, "understanding this cancer's origin provides a starting point for developing novel treatments." The study team reported its findings in
today's Online First version of the New England Journal of Medicine.
Neuroblastoma is the most common solid cancer of early childhood and has long been known to include subtypes that behave very differently. Some cases strike infants but spontaneously disappear with minimal treatment,while other cases in older children may be relentlessly aggressive from the start.
Researchers at Children's Hospital and colleagues in the multicenter Children's Oncology Group have for decades analyzed tumors for characteristics such as amplified levels of a cancer-causing gene and deletions of chromosome material. They used those tumor peculiarities to
classify neuroblastoma into risk levels that guide oncologists toward the most appropriate treatments. "Properly defining risk level helps us to
avoid the twin pitfalls of undertreating or overtreating any given child with neuroblastoma," added Maris.
However, little was known about genetic events that predispose a child to developing a neuroblastoma tumor. In roughly half of neuroblastoma cases, the cancer is not discovered until it has spread widely in a patient's body, so understanding how a tumor originates may allow
oncologists to design earlier and more successful interventions.
In the current study, Maris's team collaborated with Hakon Hakonarson,M.D., Ph.D., director of Children's Hospital's Center for Applied Genomics,to analyze blood samples from approximately 1,000 neuroblastoma patients,
as well as samples from some 2,000 healthy children recruited through the Children's Hospital network. A DNA chip analysis performed at the genome center identified three single nucleotide polymorphisms (SNPs) -- changes
in single bases on the DNA helix. Out of over 550,000 SNPs studied, those SNPs were much more common in patients with neuroblastoma, compared to the controls. The three SNPs occurred together on a band of chromosome 6 designated 6p22.
The researchers repeated the analysis in blood samples from additional groups of patients and control subjects from the U.S. and the U.K., and confirmed their finding that variants in the 6p22 region were implicated in
neuroblastoma. There are two genes in the 6p22 region, but their functions are largely unknown.
"We are doing further studies to understand how these relatively common genetic changes translate into increased risk of cancer," said Maris. "Ultimately, they probably cause subtle changes in gene expression during early development, interacting with other genes yet to be discovered. This suggests that neuroblastoma has complex causes, in which a series of genetic changes may occur at different sites to combine into a 'perfect
storm' that results in this cancer."
The researchers found that patients with these at-risk SNPs on chromosome 6 were more likely to develop aggressive neuroblastoma. The initial changes on chromosome 6 in all their body cells eventually led to
the genetic abnormalities seen in tumor cells in high-risk forms of the disease.
Because their finding reveals only the first step in a series of molecular events, added Maris, it would be premature to do prenatal genetic testing for the SNPs on chromosome 6. His research team will continue to
perform genetic analyses, in search of other gene changes that interact with those SNPs. One data source will be 5,000 tissue samples in Maris's lab -- the world's largest collection of neuroblastoma samples, drawing on
decades of research into the disease by Maris, his colleagues and predecessors at Children's Hospital.
"This discovery lays the foundation for learning how these initial changes influence biological pathways that lead to neuroblastoma," added Maris. "Understanding those pathways may guide us to new and better therapies that precisely target this cancer." Hakonarson added, "This study represents one of many ongoing projects to which scientists at The Children's Hospital of Philadelphia are committed, and we anticipate several comparable discoveries will be made in other common and equally
complex pediatric disorders, such as autism, asthma, ADHD and diabetes."
The National Institutes of Health supported the study, along with grants from the Alex's Lemonade Stand Foundation, the Center for Applied Genomics, the Abramson Family Cancer Research Institute and the Institute
of Cancer Research, located in the U.K.
Among Maris's and Hakonarson's co-authors were several collaborators from The Children's Hospital of Philadelphia and the University of Pennsylvania School of Medicine; the Institute of Cancer Research in Surrey, U.K.; the University of Birmingham, U.K.; the University Federico
II, Naples, Italy; the University of Rome; the Children's Hospital of Los Angeles; and the University of Florida.
About The Children's Hospital of Philadelphia: The Children's Hospital of Philadelphia was founded in 1855 as the nation's first pediatric hospital. Through its long-standing commitment to providing exceptional
patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children's Hospital has fostered many discoveries that have benefited children
worldwide. Its pediatric research program is among the largest in the country, ranking third in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have
brought the 430-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu .
If you haven't done so already, check out the new pics!
Thursday, May 8, 2008 9:06 AM CDT
Hello Everyone & Happy Spring
We've been so busy; sorry for the lack of updates. Everyone is doing great. Lyrissa goes back to see her oncologist next month, but I don't think she'll need scans until July or August. She and Nicholas just went to the dentist and Lyrissa has to have two cavities filled. But the exciting news for Roo is that she lost her bottom front tooth in April! She didn't even tell us it was loose - she just walked in from the porch one day and told her dad she pulled it out. The Tooth Fairy paid her a visit that night..she was so tickled!
We managed to make it through the past few months with just a few viruses, but Lyrissa may still need to get tubes in her ears.
She and Nicholas and the baby are doing great..lots of playing outdoors and getting ready for summer...We're also planning another Disney trip soon. I will update after she sees Dr. Griffin next month. Thanks for checking in and CHECK OUT THE NEW PICS...They're not the best quality because they were uploaded from another site. But I heard from someone in Colorado that I needed to updated my photos! :) P.S. The baby looks just like a tiny version of Roo when she was a baby, but he has blue eyes just like Nicholas does. He is a combination of both of them.
Monday, March 24, 2008 3:06 PM CDT
"If I Get To Five"
On the first night in the hospital, as we were just learning that Lyrissa had what was most likely a serious malignant tumor on or near her kidney, I walked down to the lounge area of the oncology floor where we had been admitted hours earlier. Lyrissa had been ordered to fast because of the next morning's surgery and I couldn't bear to hear her beg Greg for "o juice" anymore.
While sitting helplessly in the lounge, I noticed all sorts of things posted on the bulletin board about childhood cancer; support groups, financial resources, etc. One pamphlet was an ad for a book called, "If I Get To Five." It's a book written by a pediatric neurosurgeon, who details his expereience with children facing life-threatening illnesses. He writes about their amazing strength and resilience, and how one child would preface every dream, plan, or wish she had with, "If I get to five..."
I remember thinking that that was my greatest wish at that very moment was that Lyrissa would someday "get to five." That she would triumph over whatever this nighmare was or was to become, and someday be a five year old.
Well, today Lyrissa has gotten to five. Yes that's right, five years ago today, a wonderful, incredible, human being came into my life, bringing with her lessons that I learned through her suffering and her strength. I could have never predicted all the hurt my sweet precious baby was to go through, nor the lowest of the lows and the highest of the highs a parent could ever experience. But, here she is today, with her amazing spirit and perserverence, ready to start kindergarten in the fall.
Two weeks ago we went up to CHOP for her yearly follow up, and she continues to receive a clean bill of health from her transplant doctor. She will see him again in one year, then after that, be followed by a long-term care team who manages and measures the after-effects of treatment in children with cancer.
Happy 5th Birthday, Lyrissa!! Continue to shine and smile and beat those odds! You're loved by so many and admired by your mom and your dad more than you'll ever know! I am so lucky to see your beautiful face every morning and to be called "mom" by YOU. You inspire me. I love you forever and ever...Mommy :)
Sunday, February 24, 2008 6:37 PM CST
Hi Everyone!
Great news! We got the "all clear" on Lyrissa's scans from Friday, 2/22. Thank you God! And thanks to all who continue to pray for Roo! We are so blessed that she continues to remain free of disease and we appreciate every single minute with her!
Baby Noah is doing great! He sure gave mommy a run for her money, beginning in mid-December, with placenta issues. But after a month long hospital stay for mom, things got straightened out...he came out fine and is a very sweet little guy. And thankfully, his health is good. Nicholas and Lyrissa love having a little brother around, and love to help mommy and daddy.
Lyrissa also had an EKG and echocardiogram on Friday, as part of her protocol, but I don't have those results yet. I will update more in the coming weeks. Happy Birthday to Daddy on 2/27! He is turning 29! (smile...)
Wednesday, February 6, 2008 2:34 PM CST
Lyrissa is a new big sister!!! Noah Caiden was born yesterday afternoon and weighed 6.6 lbs!!!! Margi is fine, and Ga is running the show in Delaware! Lyrissa's scans have been postponed until Feb 21st and 22nd. As soon as she emails photos of Noah I will post them!
Claire
Thursday, January 10, 2008 8:37 PM CST
Hello Roo fans out there. My sister is in the hospital because of complications with the placenta and will probably be in there until delivery, which is tentatively set for early Feb. Lyrissa is scheduled for an MIBG, cat scan, echo, and EKG for 1/24 and 1/25 and we will update when we get the results.
Thanks for checking in!
Claire
Wednesday, December 12, 2007 9:51 AM CST
Lyrissa had her appointment with Dr. Griffin and her labs on Monday and everything went great! Dr. Griffin wants Lyrissa to have an MIBG and a CAT scan again in January, along with an EKG and echocardiogram to check her heart. But the good news is, that after that, he won't need to see her for six months! What great news!
In six months, he will perform scans again, and assuming everything is good, wait yet another six months to see her and do another set of scans. That would take us until about this time next year. At that point, he says that if all is still good, THAT WILL BE THE END OF HER SCANS!! Can you believe it?!!
He said that as she gets further out from diagnosis and treatment and her risk of relapse decreases, that the increased risk from continued radiation exposure from the scans becomes a factor. So, the bottom line is that, assuming Roo stays nice and healthy, we may only have a total of three more sets of nerve-wracking scans to endure! I am so thrilled to be able to see the light at the end of the tunnel...hopefully! :)
Lyrissa is doing great...she seems to be feeling good and gets more and more "happy" with each passing month and year. Her little "sad face" is something I see less and less of and she is getting more comfortable and less fearful with adults.
Since this means that hopefully Lyrissa will have less frequent medical news, we may be setting up a website that is more detailed with room for more pictures and more frequest updates, such as infomation on the new baby, etc. It will be more of a website/blog for the family as a whole, and then keep Lyrissa's site to just periodically update about her medical tests.
When we get our new website up and running, we will give our email address out on this site, and anyone who is interested can email us for the link to the new site. That way, we can have a site with the focus on our family and happy things, including info on the new baby and more room for current pictures of the kids, etc. This will be great for our family too, who are far away and can see up to date pics and read news on the kids. We'll still continue to post occassional updates here on Caringbridge on Lyrissa's medical progress.
Thanks for checking in and have a wonderful holiday! Will update soon!
Wednesday, November 21, 2007 9:34 AM CST
Hi Everyone -
We had to again reschedule Lyrissa's doctor's appointment. She was a little under the weather on Monday night, and we weren't sure if she would be up to it on Tuesday, 11/20. So rather than cancel at the last minute, she is now rescheduled for December 10, for labs and Dr. Griffin.
She is doing fine, though, but she and Nicholas both have bad colds.
I'll update after 12/10..thank you for checking our website!
Have a nice Thanksgving!
Wednesday, November 7, 2007 11:49 AM CST
Hi Everyone!
We're not seeing Dr. Griffin until 11/20,(rescheduled)so I will update more after her appointment then. In the meantime, Lyrissa seems to be doing great. She and Nicholas had a lot of fun going trick-or-treating and she is loving gymnastics. Last week they had a "pajama party" in gymnastics and Nicholas also got to go. For a while he was having a ball on the brightly colored mats, swinging from the bars, and doing flips from the slides. But, alas, Nicholas can only be entertained for so long until he has to make his own fun. He decided to move on to bigger and more exciting things - and made his way over to the fire alarm and wrapped his little fist around the lever to PULL. Luckily, I stopped him just in time! :) What a rascal!
Tonight is an open house at Lyrissa's school, where she continues to thrive! It is absolute pure joy to see her happy and excited to be a part of life. I am SO tremendously grateful to have Lyrissa in my life! I pray it is FOREVER! Lyrissa has taught us so much about life the things that are important. She is so loving and kind and is crazy about her family, and especially her wonderful dad. Yes, Lyrissa is "spoiled rotten" by her dad, but who cares?!! :)
Nicholas is turning into a real little "man." He loves all things BOY! He is working on his potty-training now, in the hopes that I don't have to have two in diapers like I did before. He'll get there soon!
Anyway, I will update more after her appointment with HEM/ONC and I'll let you know when Dr. Griffin plans to scan her again. I know she is due for a bone scan and cat scan this month, but I am hoping he'll let us postpone it a little longer! We'll see...
Thanks for checking in. Margi
Thursday, October 18, 2007 7:19 PM CDT
Hi Everyone..thanks for checking in..
Lyrissa had her MIBG scan on 10/5..I am not absolutely, 100 percent certain of the results, but I did kidnap the radiologist following her scan and ask her about results. (I couldn't bear to go through another weekend..wondering...) Anyway, I think they saw some activity/uptake in her intestinal/bowel area, which she noted, and maybe on her left adrenal gland...but she did say, she saw "nothing concerning," and that everything looked "within normal limits." I haven't gotten a call yet from Dr. Griffin but I will take that as a good sign...no news is good news, I am hoping...
This time for her scan, I took another approach which my sister and a friend had talked to me about -- and that was just to know that it is completely out of my hands and that the only "control" I have is making sure she gets to her appointments. It seemed to work to alleviate my fears! But I must admit that the week or two right before her scans I always go through such a rough period where it seems (it's in my head) that we have the best time together..almost like there is a little nagging worry/prayer/hope in the back of my head saying, "Please don't let these good times just be memories someday." Anyway, I have tried to change my way of looking at that, thanks to trying to have a lot of faith and hope... :)
Anwyay, we are scheduled to see Dr. Griffin for routine visit and labs on 11/7, so I will update more then.
Lyrissa continues to do really well and she is enjoying school so much this year! She had fun on a hayride, picking pumpkins with Mommy, Daddy, & Nicholas, and then doing it all over again on her field trip at school. And the exciting news for Roo is that she began taking gymnastics and loves it! Nicholas is going to enroll too, and hopefully they'll stop taking the cushions off the couch and jumping on them! But they have lots of energy and I can't complain about that! :)
Well, we're moving right along with planning for a new baby. I've had a few "bumps in road" along the way, but that's okay..we'll be okay... I will update more after 11/7. MANY thanks to all who pray for Roo and continue to keep up with us...
Tuesday, September 11, 2007 11:26 AM CDT
UPDATE!! UPDATE!! LYRISSA'S MIBG SCAN HAS BEEN RESCHEDULED UNTIL OCTOBER 5. PLEASE CHECK BACK AFTER THAT DATE FOR RESULTS!! THANKS!
Hi Everyone!
Well, the summer got away from us..so sorry for not updating sooner.
Lyrissa started Pre-K yesterday! Go Roo! They deceided to place her in a five-day pre-kindergarten class instead of pre-school because they felt she was ready and her birthday is early (March). She is doing great!
We just got back from a fun-filled week at the beach. Lyrissa and Nicholas had so much fun running in the sand, digging castles, being covered in ice cream, etc., etc. I got some great pictures Claire can post real soon.
Lyrissa got some new Magic Button (hearing aids) molds which are pink. She looks so cute. We are so very lucky that the doctor's office decided to GIVE them to us and not make us pay, just to be nice to our family. Unfortunately, we lost our Medicaid coverage for Roo, and BC/BS covers no part of the hearing aids which are so expensive and need to be replaced frequently because her inner ears are growing. So we are really grateful.
On September 14, our family was asked to be on the radio broadcasting from King of Prussia Mall. CHOP is doing a program and highlighting several families so we are really excited about that. I have to get the station number and then I can post it if you're interested in listening in!
Please keep Roo in your prayers for her MIBG scan (repeat follow-up from June) is on September 26. Please pray for no evidence of disease. She is such a miracle. We have been back from CHOP now for two full years, and not a day goes by that I don't realize how fortunate I am to have Roo in my life. I know I brag a lot about Roo, but she is a true joy who has come so far and I am so proud that I can be her mom.
Anyway..now for the BIG news.....Roo and Nicholas are going to have a little baby brother or sister come mid-February! They're very excited!
I will update Lyrissa's scan results in late September! Thanks for checking in...
Wednesday, July 18, 2007 4:07 PM CDT
Hello Everyone..Thanks for your patience. I was hoping to update sooner, but believe it or not, we had to wait to talk to Dr. Griffin on the MIBG scan. The CAT and bone scans were fine. The MIBG scan showed a small lymph node that seems to have become calcified. According to Dr. Griffin, this was seen before on a scan, but appears so minimal that it wasn't even seen on the CAT scan this time.
Initally, on Friday, Dr. Griffin said the radiologist saw areas of uptake in the liver, which of course is NOT what you want to hear!! However, today Dr. Griffin said, no, that was an "over-reading" by the radiologist. Her liver is fine - THANK GOD! Major organs take up the MIBG dye anyway, so I did see her liver, among other things, lighting up on the scan. The tech said her scan looked good to her so I figured we were good to go. But rather than give us a four month break like he originally said on Friday, he will rescan her in two months just to be sure. He did not seemed worried; he said he had two different radiologists review it with him today, and they just feel it is an old lymph node. Well, I will take that. It sure beats the weekend from hell that I had, thinking she may have relapsed to her liver! :(
Anyway, one need look no further than Roo herself to see the picture of health and abundance. She is doing great. Both she and Nicholas had well checks yesterday and are thriving! I love it! All I wish for in my life is healthy kids. Nothing could beat that. I just want as much time with Roo as possible (and my little handsome rascal of course, too!) :)
Lyrissa was scheduled to get tubes in her ears at the end of this month, but I think I will reschedule for after summer. We are having a good summer together and Lyrissa is going to camp three days a week at the same place she has been for the last year. I plan to update in the next few weeks with some more info...but for now, I'll just say thanks for checking in with us and praying for good scans!
Tuesday, June 26, 2007 8:07 AM CDT
Hello Everyone!
Thanks for checking in....Well, we had a slight glitch in the scan schedule last week. Wednesday we had the bone scan which the techs and the radiologist doctor told me preliminarily looked good. Thank God!! But on Thursday, after we drove up there, no sooner did we pull in the parking lot, but Lyrissa got sick everywhere! Poor Roo! She had been coming down with a stomach bug and that's when it hit her.
Well we did go in and thought we would give the CAT scan a try, but then Roo continued to get sick and they did not want to do it. So, her CAT scan was cancelled, as was the injection which is given that day for the next day's MIBG scan. So we also cancelled Dr. Griffin and labs.
Lyrissa was down pretty much all weekend and vomited each day. But by late Sunday she was starting to perk up.
We are now scheduled to have her CAT scan on July 11, along with her MIBG injection for the MIBG the following day, July 12. She will then see Dr. Griffin and have labs on the 12th as well.
Please continue to pray for Roo to have clean scans and remain free of neuroblastoma forever!!
Will update on July 12 or 13. Thanks for the great guestbook messages too!
Thursday, May 31, 2007 4:22 PM CDT
Hello Everyone!
Sorry for not updating sooner, but no news is good news, right?!
Lyrissa has had a real good couple of months. She and Nicholas enjoyed a good two months without any illness, but last weekend she got another ear infection. :(
It's that time again - SCANS - UGH! Lyrissa must now have all three scans at this point in her protocol. She is scheduled for scans on June 20, 21, and 22. She'll have a bone scan, a CAT scan, and an MIBG scan (one each day). The last day (Friday, 6/22) she has an appointment with Dr. Griffin and labs. Hopefully he will give us the results at that time. I can't stand the whole process, the waiting, the stress, etc. The one good thing is that she no longer gets sedated so that part of the process is much better.
Please pray that Lyrissa remains free of this horrible disease forever. We have lost several fellow neuroblastoma warriors recently; a little boy we treated with up at CHOP, and someone we knew of just from this little internet community, so it makes me know how lucky we are to have Roo where she is today. It is my greatest hope that she never has to suffer again. I also know at least three other people who have loved ones suffering from childhood cancer. That is way too many people to know, and I know them completely outside of Lyrissa's journey. Sometime in the near future, I hope to become a part of something that helps to fight for a cure, although I am not sure of that path just yet.
Anyway, as far as the fun things in Lyrissa's life, they include field trips at school, play dates with friends, and a birthday party where they all were dressed as princesses and got to walk down a runway. It was so great; she loved it. Lyrissa and Nicholas have spent endless time on swings and slides; they have so much fun playing together at the park. Lyrissa acts ornery now and then, and she and Nicholas do have their fights. But they always make up, and love to hold each other and dance real slow when the "I Love You" song from Barney comes on. It's so cute!
Nicholas is still a little rascal, running around like Curious George, destroying things and exploring how to dismantel everything in my house! That's okay though, I'll take ornery, wild, fighting kids any day! It puts so much into perspective after seeing your child "down" for so long. Healthy, active, energetic kids are a welcome joy!
In addition to her upcoming scans, Roo is seeing a new ear/nose/throat doctor and audiologist on June 6. Her hearing has gotten much worse, and I think she may need new ear molds made. Without her little "magic buttons" she can hardly hear anything. She constantly says, "Say it weel lowder!" It's sad to see her struggle, but it's okay because she is here, and I will take her any way I can get her! I still am so crazy about her, even though she is becoming real familiar with time-outs! :)
PLEASE KEEP ROO IN YOUR PRAYERS FOR CLEAN SCANS! I promise to update as soon as we know her results in June!
Thanks so much for checking in on us.
Thursday, April 26, 2007 4:35 PM CDT
Well, I waited as long as I could for my sister to put some Disney photos on Roo's website, but I got impatient. Here are some I took on the most fabulous vacation in the world!
Claire
Saturday, March 24, 2007 9:02 PM CDT
HAPPY 4TH BIRTHDAY TO ROO!
We're back from Disney! We had a fabulous time; it could not have been more perfect! Of course, the trip was not without some pre-Disney drama, however. We were scheduled to leave on 3/17..on 3/14 the doctor re-checked both their ears and found that Nicholas had an ear infection in both ears, and Lyrissa was starting to get one in one ear. On the way home from the pharmacy Nicholas began vomiting and that lasted several hours. The next night, 3/15, Lyrissa got it even worse. The next day, 3/16, mommy got it worse than both kids! It was terrible - it really wiped our family out. So the decision was made to leave 3/18, with the understanding that we could always add an extra day at the end, but we would have to move into a hotel. We were staying at Give Kids the World. It's a little village/resort in Kissimmee, just for Wish kids and their families.
Well, to say we had a great time is an understatement! We went swimming, enjoyed all you can eat ice cream, visited with characters, played games, and that was all just at the village! We did Magic Kingdom on Monday, Animal Kingdom on Tuesday, and stayed in the village on Wednesday for swimming and fun there. On Thursday we did Sea World where Roo got a personal meeting with some dolphins and fed a fish to one! It was incredible. That night, we did Downtown Disney, where Roo and her cousin Callie got made into princesses, complete with the hair, make-up, gown, shoes, and photo shoot. Wait til Claire posts the pics; they're awesome.
Well, we were having so much fun mid-week that we called Make-A-Wish and told them that we would definitely like to do the full trip, and they learned that we could just stay on in our villa where we were. How lucky are we?! So Friday we did Universal, where Roo got to sit front row and watch a Barney show, then get a personal meet and greet with Barney himself. I must admit, I was a little thrilled myself. Now, I know there are a lot of parents out there who get stuck watching Barney from time to time, but when you've watched him literally non-stop for nine straight months in the hospital, know every song, dance, game, character, etc., he actually starts to grow on you, too! I can't believe I even told Greg I thought it was the "real" Barney..duh! I got so caught up in the moment! :)
Anyway, did I mention that we were picked up from our house the morning of our departure in a stretch limo?!! Then Lyrissa got invited to meet the pilot and see the cockpit. But Roo decided she did not want to meet the "pirate" (she heard me wrong), but they still made a fuss over her anyway. On the way home today, the flight attendants announced that it was Lyrissa's 4th birthday, so the whole plane sung Happy Birthday to her! Now, as if she hasn't been spoiled enough, tomorrow she will get a few presents and a cake here at home! I don't care, I love every precious moment I am given with her, and I am so very lucky to have had FOUR wonderful years with her!!!!
Believe it or not, Roo's favorite part of the trip was spending time with her Ga and Pop and her Auntie C, Jungle Jim, Joy & Callie. That was the most fun of all.
Check soon for some Disney photos!
Saturday, March 10, 2007 1:43 PM CST
We're out of the hospital! In case you missed the last entry from Claire, Roo got admitted to Kent General Hospital down here in Dover, late Monday night 3/5. She had had two days of increased hives and itching. Doctors were initially attributing it to a reaction to her antibiotic she was taking for her ear infections, even though it started on the eighth day of it. They had also considered a possible reaction to the SSKI drops she gets several days before and after scans.
Then Monday, she got real bad flu-like symptoms and spiked a fever of 102. Her lips were very large and as a precaution they admitted her. Wow, talk about bringing back a lot of memories! Thankfully, Lyrissa's fever gradually decreased and we were abole to be dischaged around noon on Wednesday 3/7. Not without my poor little Roo being turned ino a human pin cushion again, however! :(
Anyway, they ended up thinking that it was probably viral because a fever does not generally come with an allergic reaction. Who knows? Lyrissa is now on some high dose steroids, so suffice it to say that I have one hungry little grouch running around the house! Yesterday she threw a fit, screaming at me, insisting that "her thumbs were on wrong!" ??? Okay.... :)
Well, now the challenge is to get us all to Disney healthy and safe! We really, really want Roo to be able to fully enjoy her trip and have all the fun in the world. She is apparently a little more vulnerable to infection when taking steroids, so please keep Lyrissa in your prayers that she stays feeling good.
We will update after we come back with hopefully some great pictures as well..
Thanks for checking in...
Wednesday, March 7, 2007 2:23 PM CST
Hi Everyone. Lyrissa is currently in the hospital in Kent County, DE. She broke out in hives and when her lips started to swell, Margi and Greg took her to the ER. She also had a high fever. They are not sure whether it is just a virus or a reaction to an antibiotic. I will updated when I know something more.
Claire
Thursday, March 1, 2007 1:01 PM CST
Hello & Happy March!
The results of Lyrissa's MIBG scan - NO EVIDENCE OF DISEASE! Thank God and thanks for the prayers and good thoughts. Her CAT scan showed some swollen lymph nodes in her lungs, but she had had a really bad cough and cold and that was probably the worst day of it. Dr. Griifin says we can just do our regular set of scans again in three months and recheck. Like last time, Roo did her scans wide awake and was perfectly still! I LOVE HER!!
The night after her scans, poor Roo woke up with an ear infection...turns out one in each ear! Then Nicholas the next day...then brilliant mommy left the medicine out all night and it went bad...so...$66 dollars later..new medicine.! Oh well...I've been through worse :)
We leave for Disney on 3/17..we can't wait..I promise to update with pictures as soon as we come home!
THANKS FOR ALL YOUR WELL WISHES AND PRAYERS!
Tuesday, February 6, 2007 3:25 PM CST
Hello & Happy February!
We saw Dr. Griffin on 2/2 and Lyrissa is scheduled for an MIBG scan and a cat scan. She'll have the cat scan on 2/22, as well as the dye injection for the MIBG scan the folowing day, 2/23. The scans are scheduled WITHOUT sedation, since she was able to do it last time! Go Roo! She will get labs then, too.
The protocol for her treatment does not call for a bone scan this time. The last time we did scans (October) we got to skip the MIBG scan. The MIBG scan is the really important scan which specifically checks for neuroblastoma cells. So PLEASE pray for good results for Roo and that she may remain free from this horrible disease forever! Thanks.
Well, Lyrissa had a very busy month. She went to three birthday parties, one of which was bowling. It was great to have Roo included in life! She and her class also went to see a show, and one day last week they got to all wear their pajamas to school! It was so cute. Roo wore her Dora PJs and her piggie slippers. Lyrissa had a friend from school over for a playdate, and ths Friday she is going to see "Go, Diego, Go!" at the Tweeter Center. Needless to say, Lyrissa is enjoying life and getting to do fun things. She certainly deserves it.
Unfortunately, Nicholas and Lyrissa keep getting the usual bugs every few weeks, and we seem to always be at the doctor's office for one thing or another. Roo got a real severe ear infection again last week, and Dr. Griffin wants us to ask about tubes. That's at least three infections since August.
We had a great visit in late January from our friend Denise who was passing through town. Unfortunately for Denise, as she was preparing to leave our house the next day, both Lyrissa and Mommy were hit with the stomach bug! After considering tying Denise to the chair and forcing her to be our nanny/nursemaid for the weekend, we decided to let her leave peacefully. But not before she had to witness several episodes of vomiting from two members of our family who will remain nameless! :)
Anyway, I may have forgotten to mention previously, but we are approved and scheduled for our Make-A-Wish trip to Disney World!! We are flying out on Nicholas' second birthday (March 17), and returning on March 23, a day before Roo turns four!! We are so excited. Our Ga & Pop and Claire and her family will meet us out there, so that will be an extra special bonus to our trip. We are very grateful to Make-A-Wish, and all the people who work hard for this program. We can't wait to go!
We ask for prayers for Lyrissa for her scans. Please pray for her to remain N.E.D. forever. I will update late February as soon as I know the results of her scans.
Thanks for checking in.
Friday, January 5, 2007 8:59 AM CST
Hello & Happy 2007!
Thanks for continuing to check in with us. Today marks two years since Lyrissa's diagnosis. We again put up our little "angel tree," decorated with many of the angels received during her illness and treatment.
In some ways it feels like just yesterday we learned of her illness, but in other ways it seems a lifetime ago. I realized sometime this past fall, that I have now been a mom knowing neuroblastoma, longer than I was a mom innocent of the world of childhood cancer.
It seems strange that Nicholas is now the exact same age Lyrissa was at the time of her diagnosis. It is interesting to see what things (milestones and steps) he will be doing at this age, since most of Lyrissa's second year of life was spent sick. In some ways it is like I am a "new mom." For instance, both kids got a bad flu and Nicholas had a real high fever for six days. I really felt lost as to what to do. He was the sickest I have ever seen a kid, outside of Lyrissa during treatment, and the doctors had to tell me to use Motrin to bring his fever down. In cancer kids, Motrin is not used,(just Tylenol) so I had never even thought about or bought Motrin! I may have mentioned before that Lyrissa was never really sick before 1/5/05.
Anyway, the good news is that Lyriss'a preliminary repeat HIV and labs from that blood transfusion scare all appear to be fine now. We're still awaiting some final results, but they think it's okay. Also, Lyrissa began her re-immunizations in late December (four shots in each leg - ouch!), and she should be all caught up by late January.
We had a great Christmas! Santa came with a dollhouse for Lyrissa and a train and train table for Nicholas, among other things of course. (SPOILED!:)) Lyrissa also particpated in a Christmas show at her school, where she was on stage with other children singing and ringing her little bells! Pure happiness!
In mid-December, we attended the Delaware Dreams Christmas party for kids treated for cancer and it was a lot of fun. We got to see our little buddy Jada and her family, and I am happy to report that Jada is also doing very well.
Lyrissa will see Dr. Griffin on 2/2 and also have routine labs done. I am expecting he will set up some scans for mid-February.
Today is such a happy day for us as we are so very grateful to have had TWO MORE YEARS with little Roo!! I hope to have a lifetime. I have come to the conclusion that Lyrissa was put on this earth to make me a better person, and I for one, plan to spend the rest of my life trying to live up to that responsibility! :)
Thanks for checking in...
Tuesday, December 5, 2006 4:21 PM CST
Hello & Happy December!
Boy was November busy for us! Lyrissa wound up in the emergency room on 11/7 due to a severe ear infection in BOTH ears, and Nicholas was right behind her a few days later! On 11/12 Lyrissa and her "God-sister" (smile) got to see a Winnie the Pooh play at the Children's Theatre, and then go out to lunch and have big ice cream sundaes like two little spoiled rascals! They loved every minute of it!
Thanksgiving was very nice, as Lyrissa loved helping with all of the preparations and all of the excitement at school. When asked at school what she was thankful for, Lyrissa replied, "My baby brother Nicholas." :)
Late November saw poor Roo sick again, this time with a fever and slight stomach bug. She saw her pediatrician, who basically said it was probably just a virus, and sure enough, poor Nicholas got it a few days later, though no where near as bad as Lyrissa. Poor Nicholas - I must admit to sometimes feeling "relieved" when he gets it, as it serves as some sort of confirmation that it is indeed a bug, and not something worse. When Roo has viral symptoms like that, it can be particularly stressful because her neuroblastoma presented with many of those same things. Not only does it bring bad bad memories of her illness, but it can cause a lot of worry. It's hard to know what is "normal" anymore. So thank God I have Nicholas as my little guinea pig! :)
Anyway, these illness are going to be common for some time and Lyrissa is going to start getting re-immunized in late December. Also, Dr. Griffin reminded me to get her labs re-done because the HIV showed odd results, so now they are going to test the RNA (which I believe is like DNA). Who knows..I try not to think about that. (You may remember that this is an issue of one of the blood donors recalling something in his or her past, that has now created a need to check Lyrissa for some of these communicable diseases).
Lyrissa and Nicholas decorated their Christmas tree over the weekend. Because of that little devil Nicholas, all of our decorations are at the very TOP of the tree. You can't put anything within his reach. He has now learned how to open doors, and much to my dismay, he has mastered how to open the SLIDING GLASS door, and can now leave the house on his own! What a stinker he is! :) Some other feats include opening the lid of the toilet, and throwing lots of thing (including my cell phone) in the kitchen trash can. He babbles constantly, but his favortie thing to say is "Huh?" He hears Lyrissa say it so much since she can't hear well, that now HE says, "Huh, huh, huh, huh???" all DAY LONG! And with a big grin on his face, too.
Anyway, both refuse to get anywhere near the mall Santa Claus, but Lyrissa insists that I tell Santa all of the things she wants! One of their greatest gifts is going to be that their Ga and Pop will be spending Christmas with them, and Roo can't wait! She has a whole bunch of instructions for her Ga when she sees her!
Please keep checking in and check for an update right after Christmas because I should hopefully have her labs back by then and can cross that worry of my list...
Have a very happy holiday, and thanks for all of the prayers and support.
Thursday, November 2, 2006 8:42 PM CST
Hello & Happy November!
I am happy to report that ALL of Lyrissa's marrow testing proved negative for disease! We are so relieved!
Dr. Griifin called shortly thereafter and told us that one of the blood donors (from the many transfusions Lyrissa had in 2005) recalled something about his travels that he had forgotten to report. SO...Lyrissa had to come in and have her blood tested for Hepatitis A, Hepatitis C, and HIV! UGH..it's always something...
Dr. Griffin called us the other night saying that the labs showed strange results, and she will now therefore have to be re-tested! Oh well..we'll try not to worry about it.
As for Lyrissa, she is having a wonderful fall. Trick-or-treating went off without a hitch, and she and Nicholas made it around the block like two old pros. She told me today that she is going trick-or-treating again tomorrow, and of course, if it were up to me, she would. :)
Lyrissa also had a great time on her class trip to a small farm, complete with a hayride and pumpkin picking! Lyrissa and I rode on the hayride and had such a wonderful time together. As I have mentioned before, each day and each experience like that is deeply treasured. In general, I "pinch myself," so to speak, to be certain this is not just some wonderful dream...
Lyrissa's new pink hearing aids are working well for her. Many people see a big difference in her when she has them in; she talks more and overall seems happier. The minute she comes home, however, she takes them right out!
Well, AS PROMISED THE PICS OF NICHOLAS ATTEMPTING HIS FEAT ARE POSTED!! He is photographed as he contemplates his attempt to hang from the chandelier. Also, there is one of Roo on Halloween. Check them out..let me know what you think!
I will update soon with more pics and the info on her labs. Thanks to all who check in and thanks for the wonderful guestbook entries!
Wednesday, October 18, 2006 9:16 AM CDT
Hello & Happy October!
We received the results back from Lyrissa's CAT and bone scan which were both negative for disease. Thank you to God and everyone who prayed for our "Roo!" Shortly thereafter, Lyrissa had her bilateral bone marrow aspirates done - a very painful procedure..she woke up really sore :( It was hard to see her in pain and suffering (yet again), and she was reluctant to go back to the O.R. with Dr. Griffin. She was very upset, so they had to put a mask on her with ether to help her fall asleep. Not fun, considering it brought back memories of her being ventilated up at CHOP and what a horror that was.
Well, to cheer Roo (and myself!) up after that, she and I took a little trip to a small zoo here and she had a blast seeing all the animals and walking around playing in the leaves with Mommy. Can you imagine the joy of a day I would never dare to dream I would have again?! :) In the fall of 2004, just a few months before Lyrissa's diagnosis, we did the same thing. What great memories; something I clung to to get through the tough times, never daring to believe that it would again someday be a reality. Well it was, and how grateful I am for each day with her. Her beauty and her strength and resilience is what gets me through when I feel overwhelmed and frustrated by the unfairness and pain that Lyrissa and so mnay other innocent kids and their familieis have to endure.
But anyway, the preliminary results of her marrow (the aspirates and the biopsy) are negative for disease. You may remember that back in May, the lab did some extra step for some reason - something called immuno-histopathology(SP?), and saw some "funny looking cells." Nothing they could rule in or out, so they are repeating it, but we don't have those results yet. But so far everything looks good.
Lyrissa's dental visit was much better than we thought. It turns out that she does not have to have a cavity filled after all. Her teeth have sustained some damage from the chemo, but it's not as bad as I thought. Also, her new PINK hearing aids are on their way, as well as new ear molds they created since hers had been causing much discomfort. She sees the audiologist again on 10/23.
WARNING: BRAGGING MOM ALERT BELOW:
The amazing news with regard to her scans is that my little "Roo" DID NOT HAVE TO BE SEDATED FOR HER TESTS! Lyrissa bravely lay perfectly still for a total of about an hour, despite noisy machines, the table moving, large plates getting close to her face, and at times going in and out of a tube. I told the doctor that Lyrissa is generally very compliant and maybe we could give it a try. After a bribe of chicken McNuggets and a musical Sesame Street toy she found in the nuclear med room (the doctor said she could have it!), she didn't move a muscle!! Lyrissa's ability to undergo scans without sedation has HUGE implications for us. It means that she will no longer have to fast because of anesthesia, we won't have to be there hours ahead of time, and we don't have to always have a morning appointment! Not to mention, she won't have anesthesia in her making her groggy afterwards! We're so proud of Roo!
Believe it or not, Dr. Griffin says Lyrissa does not have to come back until January of 2007! Wow. She will be two years from her diagnosis then, and we pray she remains N.E.D. (forever!)
Lyrissa and Nicholas have big plans for Halloween. Ok, well, Mommy does at least! :) By hook or by crook, I am getting those two in costumes and out the door! I don't care if they're kicking and screaming, if their costumes are too small, etc., nothing will stop me this year! (smile) Can you believe Lyrissa has never trick-or-treated before? Not only that, but she refuses to even TRY a piece of candy! But this year, she is excited to wear her Minnie Mouse costume (basically a huge pink furry pajama-thing, which is probably 500 degrees inside), and Nicholas will be donning an already-too-snug pumpkin suit. And the weather isn't going to stop me either - I already have a plan if it's too warm - she will wear last year's Cinderella dress - like it or not - and Nicholas can be a plain old ghost in a white pillowcase. And if it rains? I bought them cool umbrellas, no excuse not to trick-or-treat. So there. :)
Lyrissa & Nicholas also recently enjoyed going to a birthday party and jumping around in Moonbounces. We are also looking forward to the Rehoboth Beach annual Halloween festival called Sea Witch. Again, this was something Lyrissa and I (and Nicholas in utero) did in fall of 2004, with our friend Amie and her two little ones. Amie and I hung on to the hope that Lyrissa would one day be able to attend Sea Witch again, and here we are!
Also, one final note, several people asked me, "Was Nicholas REALLY hanging from the chandelier?" And to prove it, I have a photo which shows him attempting to begin his feat. I also have a photo of him talking on "the phone" to a plastic container of baby food, as well as one of him with the remote, obviously planning on ordering another movie! I will have Claire post them soon.
Thanks for checking in...
Wednesday, September 27, 2006 1:57 PM CDT
Hello and thanks for checking in to see how our precious little "Roo" is doing!
Lyrissa continues to thrive at preschool. Her teacher told me she is an "observer" and is still very quiet. They said they see her secretly smiling to herself a lot! :) I received this note from her teacher:
"Lyrissa enjoyed sitting in a circle and watching our game of 'Doggie, Doggie Where's Your Bone'(Many smiles!!)"
How great is that? She continues her role of making my life so wonderful just by being in it, and brings great joy to Greg and me on a daily basis. As for Nicholas, he is wild, fun, and full of energy and love. His daily activites have included hanging (literally) from the chandelier, repeatedly opening the dishwasher and removing (of all things) the knives, ordering a movie on Pay-Per-View (don't ask me how, I don't even know how to do it), and walking around with the remote control up to his ear like it's a phone, babbling furiously to his imaginary friend on the other end! He is so sweet!
Lyrissa will be up at A.I. the first week in October for a bone scan, a CAT scan, and new ear molds for her hearing aids (which have been bothering her). She is also seeing a dentist; she needs at least one cavity filled, and on 10/10, she will have the dreaded bone marrow aspirates under general anesthesia. Will post updates as we know results. Please, please keep Lyrissa in your prayers to remain free of disease forever!
CHECK OUT THE NEW PICS CLAIRE POSTED. THEY'RE OF THE JULY ORGAN DONOR BANQUET!
Friday, September 8, 2006 5:39 PM CDT
Lyrissa saw Dr. Griffin yesterday for labs and doctor visit and planning for upcoming scans. Dr. Griffin said, per the study Lyrissa is on (Children's Oncology Group), she is only supposed to have a bone and CAT scan at this particular interval. An MIBG scan (which specifically detects neuroblastoma cells) is not required for another three months, at which time the bone and CAT would not be performed.
Very confusing, especially since during our meeting with Dr. Grupp we discussed the fact that he uses ONLY MIBG for testing purposes, and unless there are symptoms or concerns, NEVER uses those other scans (or even bone marrows!) for routine follow-up.
Well, as Dr. Griffin explained, the particular study Lyrissa is on, for whatever reasons has parameters they want followed as much as possible. Dr. Grupp has a lot of kids on studies that may be exclusive to CHOP. SO...even though we may not understand/like/agree with it, we really SHOULD try to follow the study's guidelines as much as possible so that they can use the data gathered from Lyrissa, which ultimately helps determine treatment for other kids.
Having said all that, he does want to re-check her marrow, which showed some unusual cells in some sort of non-specific way in May. That is scheduled for October 5. We're still working on the scan schedule.
Lyrissa is not too crazy about her little "magic buttons." Her hearing aids can become uncomfortable and she takes them out usually midway through the day. At her preschool, another child thought they looked interesting and took one out of her ear. Then later, another one became lost. Then the teachers talked to the kids about Roo's hearing aids, likening them to someone with glasses. All the drama in her class that day, I had to laugh! Roo just keeps right on going and doesn't let it bother her. Who would have ever guessed how much I would learn from a three-year-old.
Lyrissa and I got some cool little red elephant stickers (made just for kids' hearing aids) so no wonder the kids thought they looked interesting. One morning when I dropped her off, I heard one little boy tell her she was lucky she couldn't hear well, because she wouldn't have to plug her ears if she goes to see fireworks...You gotta love them! :)
More real soon on her scan schedule..
Wednesday, August 30, 2006 8:39 AM CDT
Well Lyrissa has her hearing aids! All went well with her hearing aid fitting yesterday. Unfortunately, the hearing aids are not pink as we had ordered, but rather beige. They can switch them out for us, however. Lyrissa seems to be doing well with them; she is not fiddling with them or anything. She actually asked us to turn her music DOWN in the car coming home yesterday! She has given Nicholas strict instructions, screaming, "Don't touch my magic buttons, Nickwis!" :)
After our visit at A.I., we decided to take Lyrissa for a visit to her former day care, St. Francis. What a joy to see all of her teachers again! I know I have mentioned before what angels they were/are to Lyrissa, and never stopped caring for her. Returning to St. Francis was a wonderful feeling, and for a moment a journey back to a time of blissful ignorance; a time of great happiness, when being a mom to little Roo invovled nothing but all the good things a child should know. A time when worrying for me was minimal, pain and suffering for Roo non-existant, and stress limited to the ordinary, everyday issues with a toddler.
Anyway, it was so good to see them all, as we missed Ms. Terri, Ms. Karen, Ms. Andrea, Ms. Wilma, and Ms. Linda terribly!
We had a terrific time at Sesame Place! Lyrissa & Nicholas thoroughly enjoyed seeing all of their "monster" friends, although they were happy to wave to them from afar. The best part was all of the water activities they got to do. Last year, Roo had her "tubie" (central line) and could not play in water. It took her a while, but she really loved it once she got used to it. They loved the pool at the hotel and just to see Roo giggling and smiling in a pool was unreal. It made me feel so incredibly lucky to have Roo where she is today!
Lyrissa's preschool begins mid-September, but she is still going there now (same place as camp) for care two days a week. She is still enjoying it and I think her hearing aids will make a huge difference.
We see Dr. Griffin on September 7, which is one year to the day that we returned home from CHOP. I believe he will want all of her scans again during September, and unfortunately, bone marrow aspirates to make sure that those "strange-looking" cells they saw in late May have resolved. Please pray that her scans are clear and bone marrow aspirates normal. We've sailed through the summer without much worry, but now September brings with it some stresses. We'll get through it though, and will update soon! Thanks for checking in.
Thursday, August 10, 2006 2:19 PM CDT
Hello Everyone & Happy August!
We have been thoroughly enjoying ourselves this summer! Such a contrast from last summer.
Lyrissa & Nicholas had a great time at the State Fair. Lyrissa got to go twice; once with camp and once with us. During her camp trip, she got to see lots of animals. It was very hot and loud, and I carried Roo so I could talk to her and point out the animals. Her hearing loss makes it hard to hear voices when there is background noise, but she made the best of it.
She got to see a pig fighting its owner to avoid his bath, and a goat eating a piece of paper from her teacher's backpack (unbeknownst to the teacher!) When Greg & I took her to the fair, she got to ride several of the rides and loved it!
Last week, she and Nicholas headed to the beach with Lyrissa's godmother and her kids. They had so much fun playing together and Lyrissa did not want them to leave. She is also having lots of fun with her neighborhood friends as well.
Unfortunately, both Lyrissa & Nicholas (and Mommy, too!) have gotten two BAD summer colds, one right after the other! Both Lyrissa's & Nicholas' turned into bad ear infections, and they're both taking the same antibiotic now. It is all the new exposure they're having to other children and various germs and illnesses. It is something we will just have to deal with for a while.
Late July brought lots of frustration with obtaining Lyrissa's hearing aids. Various breakdowns in the system, lack of communication, etc., all attributed to a great big chaotic mess. You would think that after six rounds of chemo, surgery, a stem-cell transplant, radiation, and the Accutane nightmare, getting hearing aids would be a piece of cake. Well, let's just say, it SHOULD have been. But, to make a long story short, she should be getting her cute little pink "magic buttons" (as I told her they're called) on August 29. Let's hope all goes as planned.
Next week Roo and Nicholas are headed to see some very special friends, Big Bird, Elmo, Cookie Monster, and more. That's right, we're headed to Sesame Place!
We are very grateful to Bronzage Hair & Tanning Salon, in Magnolia, Delaware!! They are doing a Back To School haircut special during the month of August, and donating proceeds on 8/19 to Alex's Lemonade Stand! They are advertising it "in honor of Lyrissa Bray!" We are very touched. Thank you to Bronzage Salon.
Also, Rita's Water Ice has a lemonade flavor in honor of Alex Scott, and they donate a portion of all sales of that flavor to Alex's Lemonade Stand.
You may know that Alex Scott was diagnosed with neuroblastoma at the age of one year, and fought until August of 2004, when she died at the age of eight. Her disease was classified as high-risk, which is the same as Lyrissa, and she underwent much of the same treatment (and more). Alex's family moved from Connecticut to Philadelphia in the late nineties, I believe, to receive treatment at CHOP.
Lyrissa benefitted from the money/grants/research etc., that Alex's Lemonade Stand has raised because much of that money goes to CHOP, and the research for the study Lyrissa was on.
Usually, when people hear "childhood/pediatric cancer," they think leukemia, and lots of money goes to the research and treatment of leukemia. It now has over an 85 percent cure rate, which is great news! Sadly, neuroblastoma's cure rate is only between 35-50 percent. That is why we are strong supporters of Alex Lemonade Stand, because it directly benefits research and treatment of neuroblastoma. With hope, in our kids' lifetime, we will see a CURE!
The link for Alex's Lemonade Stand is on the main page of Roo's site.
I plan to update after she gets her hearing aids, and I am sending Claire lots of new pics to post. Thanks so much for checking in.
Monday, July 31, 2006 6:10 PM CDT
Check out the new photos!
Wednesday, July 12, 2006 10:04 AM CDT
I am so happy to report that camp is ABSOLUTELY TERRIFIC!!
Lyrissa had a tough first hour on the first day, but after that warmed up and has loved every minute of it! It is so wonderful to see her enjoy something and discovering all the fun that life as a healthy child has to offer.
Her camp has so many wonderful things planned for the kids. So far Lyrissa has done lots of water play, arts and crafts, and musical play. She has gotten a helmet for her bike which they are going to decorate for their bike parade on Thursday. Yesterday, Lyrissa was over the moon with excitement as she got to ride a school bus to a park for a picnic!
We are so thrilled with the program, that Lyrissa is going for at least one more two-week session, and we are so lucky and blessed because I just learned today that Roo has been accepted for the preschool program at this same school. I will update more on that soon, but they went to extra-special lengths so she would have a spot there, as a sudden transistion to another program may have proven difficult for Roo.
They tell me that Lyrissa was very quick to warm up to the children, but cautious/suspicious of the adults, which is usually just the opposite with kids. Because for so long, every new adult who approached Lyrissa did something which caused her physical pain, she is less trusting of them; however, this has improved greatly.
I never dared to imagine that Lyrissa would again someday be in a program with other children, participating and loving it. I still miss St. Francis where she attended before her illness; they will always have a special place in my heart.
It will be even better when she gets her hearing aids, as I think that will make her feel even more a part of things. Her hearing loss does limit her in some ways, and Dr. Grupp feels that Lyrissa must definitely have some speech and language therapy as well. This will be just to be certain that she has not regressed or been dealyed at all because of her lack of hearing.
In the meantime, Nicholas and Roo are having lots of fun together. Just this morning, she commanded him, as only a mother can do, instructing him in a loud voice, "I am going to tickle your belly now, lay down Sir!" :)
Monday, July 3, 2006 9:36 AM CDT
Hello & Happy July!
Well, today is Lyrissa's first day of camp. She was very excited but tearful when I left her, but that's to be expected. She is there now, and I am sure she is having a ball. I will update more soon on the progress of camp!
Our appointment at CHOP went great! Lyrissa now has NO MORE precautions. Even small things she can do now like be on an airplane and get her ears pierced..SO...guess who has pierced ears now?! Yes, Lyrissa and I eagerly awaited the time we could get her ears pierced, and after a girls-only day of shopping AND a puppet show AND lunch at Friendly's, Roo now has two beautiful "diamonds" in her earlobes! Well, can you imagine how happy and joyous it is to spend a day like that with Roo..no words could explain it.
It was great to see all of the people at CHOP who worked so hard to save our babys doll's life - everyone said, "Hi, little miracle" to Roo. How lucky are we??? Also, now Roo can begin her immunizations, and Nicholas can get his chicken pox shot, too. Our summer will hopefully not be too busy with doctor's appointments, except for getting her hearing aids. She sees the ENT doctor July 19, then they will fit her for the hearing aids.
Also, Lyrissa received her award at the banquet on Saturday night, which was such an honor. She was actually given an award for being both a DONOR and a RECIPIENT, since she was transplanted using her own cells! It was so nice to see Roo on stage and Gee's mom got some great pictures which we'll post soon. The grand finale of the night was when Nicholas participated in the men's fashion show and strutted his stuff down the runway showing off his Carter's and Stride Rites! He toddled down the catwalk just grinning at everyone like the little ham that he is!
I will update soon and let everyone know how camp is going. Thanks for checking in.
Thursday, June 22, 2006 7:55 AM CDT
Watch out worms! Beware bugs! Move over mosquitos....GUESS WHO'S GOING TO SUMMER CAMP??!!
Yes, you just read correctly. Lyrissa can go to a two-week summer camp program! It begins July 3, and is just for two weeks and only in the mornings. We got the okay from CHOP (by phone), and just decided to basically "go for it" and see how she does. It is a little scary, but I really think she will love it. The camp is at a little preschool and there are all sorts of exciting activites planned, such as water play, arts and crafts, and musical parades. Of course as a mom I worry how she will do, but it isn't pain or a hospital or a test or fasting, so what is there not to like, right?!
Last weekend we went to a small neighborhood gathering and for the first time, Lyrissa played independently (with other kids, but without us), and had a ball. It appears she is truly ready to do this, and it was a blessing to see her really be on her way to "normalcy" again.
We also got the okay for her to play at the beach now, so what choice did we have other than to immediately head straight to the beach for Father's Day! :) And what a great day it was. She and Nicholas played in the sand at the water's edge giggling and getting soaked! Pure joy to watch and we have lots of pictures to post. Happy Belated Father's Day to Greg who has to be the most devoted, dedicated, and patient father ever!
Yesterday Roo and Nicholas met their new pediatrician and got a clean bill of health! We even might be able to get Nicholas' chicken pox vaccination now, since her precautions are lifted; CHOP says it should now be okay. Speaking of CHOP, we have an appointment on Tuesday, 6/27, so I will update more then.
Also, in order for Roo's insurance to pay for her hearing aids, she has to have a letter from an Ear, Nose, Throat doctor, so we are supposed to see one at A.I. on July 12, but may try to get in a little sooner if possible.
A very special thanks to Gee's mom, "Aunt Tracey," who has arranged for Lyrissa to be the recipient of an award at an annual banquet to raise awareness to organ donation. Several people who have been through various medical ordeals are chosen, and it is an honor for Roo to be one of them. This will be on July 1, and I am sure Tracey or I will have some good pics to post. Will update after CHOP visit...thanks for checking in!
Tuesday, June 13, 2006 9:37 PM CDT
Lyrissa's MIBG scan today was negative for disease! Thank you God! We received this news late this afternoon and were filled with great joy. This was especially important after receiving the somewhat unsettling news last week regarding the strange looking cells on the staining test the lab did.
Lyrissa also had her two cardiac tests done yesterday (echocardiogram and EKG) after her injection for the scan, but I have not yet checked on the results. Lyrissa was so great and lay perfectly still for those tests. We are also still waiting on news of her hearing aids, and are anxious to get those because it will really help her; the poor thing is having so much trouble hearing us.
Lyrissa is very busy having fun in the sun! Now Nicholas can keep up with Roo, as he now walks everywhere! They now have a sandbox in addition to their swingset, and a child size picnic table and umbrella. She continues to rediscover the joy of friendship with our neighbors' kids and it is like Christmas everyday around here. Recent events for Roo have included a picnic in the park, feeding ducks, and having a ball with her Ga and Pop last week.
Later this month or in early July, we plan to take a trip up to CHOP (our yearly summer vacation spot) :) to see Dr. Grupp, Lyrissa's transplant doctor and to talk about re-immunizing her, and ask about the possibility of some sort of preschool in the fall!! Lyrissa is still on some minor precautions, such as being unable to swim in oceans, lakes, or public pools until one year post-transplant which is technically July 20. There are a few others as well. So hopefully Dr. Grupp will lift those soon too.
Another bit of interesting news is that Lyrissa is meeting her new pediatrician here in Dover next week. Yes, that's right, a regular old run-of-the-mill pediatrician! They want Lyrissa to begin to get acquainted with a regular pediatrician, so that if she gets something unrelated to neuroblastoma, (earaches, colds, etc.) we don't have to go all the way up to A.I. and see an oncologist. We would have loved to keep her former pediatrician, (who sent us to A.I. that scary day in January 2005, came there to tell us the terrifying news, then visited us daily for weeks) but unfortunately we are too far away from Wilmington now.
We are trying to plan our Make-A-Wish trip which will most likely be Disney and probably sometime this fall or next. I'll update soon when Roo gets her hearing aids, and goes to CHOP. She also has to see Dr. Griffin again (we're late!), and we're also past due for a visit to her radiation doctor at Christiana Hospital just for follow-up.
Anyway, thanks for all the prayers for our Roo. Please keep all the children that battle this terrible disease in your prayers.
Thursday, June 1, 2006 7:19 AM CDT
Hello & Happy June
Dr. Griffin called us on Tuesday and said that while Lyrissa's marrow aspirates (looking under the microscope) and the marrow biopsy were both negative, the lab for some reason decided to do some "immuno-histopathology staining" which will sometimes show neuroblastoma cells. Apparently, the lab saw some "funny-looking" cells, which they can't say are neuroblastoma cells, but they can't rule them out either. UGH!
Well, the bottom line is that Dr. Griffin wants to repeat the bone marrow again in three months. THREE MONTHS!!! UGH, the waiting. There is really no point in repeating it sooner because it probably will not even have resolved and the results would be the same. Great, I wish he did not even call to tell me.
But, the positive thing is that Dr. Griffin is not worried at all. He said he is "99 percent sure it is nothing," and said that he is just being "hyper-cautious" about it. You also may remember me saying that Dr. Griffin is very conservative. That is, if he was truly concerned, he would have her in there doing all kinds of tests. He is also straightforward, very honest, and does not sugar-coat anything.
Also, I learned that CHOP doesn't even do that type of testing. For one thing, if a child has not ever had marrow involvement (like Lyrissa hasn't), they would not even be routinely testing marrrow. Furthermore, when they DO test it, they NEVER take it that further step and do the immuno-histopathology staining. CHOP feels that it "causes unnecessary anguish for families because of the high rate of false positives." Tell me about it. I feel like we did last December with the false HVA/VMA urine results.
We're told that if her MIBG comes back clear on June 13, that is even more reason to believe that there is nothing to worry about. So please pray for good results for the MIBG scan.
In the meantime, Lyrissa is having a ball. She has re-discovered the joy of friendship with several of our neighbors' children and we love seeing her play and be carefree. She deserves so much joy; it's hard to tell her 'no' when she wants to play and it's late, too hot, etc. We just let her have fun. She got to splash in the hose and sprinkler the other day, after over a year of not being able to play in the water (because of her central line/"tubie").
Our exciting news is that we are eagerly awaiting the arrival today or tomorrow of Lyrissa and Nicholas' Ga & Pop coming up from Alabama to see us.
Will update more after June 13 scan. Thanks for your prayers.
Thursday, May 25, 2006 8:05 AM CDT
Great news! Lyrissa's bone and CAT scans from earlier this month, as well as her bone marrow aspirates were all free of disease! Thank you God!!
Her MIBG (the scan which specifically detects neuroblastoma cells) is scheduled for June 12. Please pray that this scan is also negative for disease.
Also, we finally got a conclusive hearing test on Lyrissa, which confirms that she has moderate to severe hearing loss in both ears. She cannot hear certain sounds such as trickling water or birds singing, as well as other high pitch sounds. She cannot hear certain speech sounds, such as 'sh,' 'th,' and 'f.' This explains why Lyrissa "translates" things I say, which can often be funny.
For instance, I told her her shirt was dirty, and she said "My foot is hurty?" She tries to make her sense of what we are saying. I said "Your daddy is a funny man." Lyrissa said, "Daddy is a bunnyman?" Thankfully, Roo was ahead of the game with speech and vocabulary prior to treatment, (bragging mom) and therefore, they feel her speech will not be affected. She already was verbal before she lost her hearing, so she knew how the words once sounded to her. Certain words that she is just NOW learning, she will mis-pronounce. We have a book about "Franklin." She kept calling it "Blanken." I thought that was odd because I knew she knew how to say 'f' but I didn't even think about her hearing loss being the culprit, but that's what it is.
Anyway, the hearing aids of today are much different than before; they are all digital and programmed via a computer. Also they are much smaller and even come in all sorts of cool colors! There wasn't a bit of sadness on my part that she needs hearing aids. I truly am just glad there's someone in this world that had the brains to create hearing aids, and also glad we're on it now before she develops a delay or her learning suffers. Also, it will be great not having to hear "The Wheels on the Bus" at fifty thousand decibels! :)
After being stuck in a hospital for so many long months, then isolated at home, you better believe I am going to make sure my girl can hear the birds sing!
We basically knew that there were two things that were almost a guarantee; sterility and hearing loss. One of the hard hitting chemo drugs, cisplatin, is notorious for hearing loss.
In addition to her MIBG on June 12, she is having and echocardogram and an EKG. I am also going to try to get her doctor visit and labs that day, too.
Will update more after 6/12, and thanks again so much for the prayers for Lyrissa's continued good health!
Thursday, May 4, 2006 4:49 PM CDT
Hi Everyone. Thanks for checking in...
May is going to be a very month for us, because Lyrissa must now have ALL of her tests done again, to re-check everything. Lyrissa's labs and doctor visit went well. Her labs look good.
On May 11 she is having bone marrow aspirations done. You may remember this is a minor surgery under sedation, where they will draw marrow from her lower back. Please pray her marrow is free of disease as it has always been.
May 16 she is scheduled for a bone scan and CAT scan under the same sedation.
Right now, her MIBG is mid-June as they are trying to coordinate the doctor's schedule. (Lyrissa has to be sedated with Propophol (sp?) and the nurse practitioner cannot administer it, so they must get a physician to do it.)
The day before the MIBG, she gets a dye injection which takes all of 10 seconds. So we may have a night or two at the Ronald McDonald house since it's over an hour to drive up there.
Our great friends in Nuclear Med, however, are trying to work on getting her MIBG in May, so we can have everything around the same time. It's hard to prolong the stresses (waiting for results) for two months.
In addition, Lyrissa needs another EKG, an echocardiogram, a hearing test, and a dental visit.
The busy schedule is compounded by the fact that little Nicholas no longer can withstand the long waits during sedations, procedures, etc. He is no longer the little "portable" guy he was months ago, content to ride along happily in his carrier. He is now so active and he wants to explore. So if any of our wonderful nurses on 3A are reading this, you may get some company from your little friend soon! :)
As always, please pray for clear scans for "Roo," and that she remain NED forever! Thanks!
Tuesday, April 25, 2006 7:48 PM CDT
Yesterday was a very exciting day here! Why? Because yesterday Lyrissa finished her last round/last dose of Accutane, finishing her treatment protocol! What an amazing feeling! God-willing, it is the end of treatment for Lyrissa FOREVER! Our greatest prayer is that Lyrissa never again has to endure such suffering!
Fifteen months and 19 days of treatment. Wow. To get through the very tough times, we reminded ourselves that as bad as aggressive chemo, a stem-cell transplant, and radiation are, neuroblastoma is worse. Lyrissa had to be taken to the brink of death in order to save her life, as one doctor told me.
She is still going to be getting regular labs, scans, etc., but the treatment portion is OVER!!
When she is one year post-transplant, (July), we will go back to CHOP to see where her immune system is (a lab test) and when she will get re-immunized. For now, I believe she will get scans every three months. We see Dr. Griffin Monday, May 1st, for labs and doctor visit, and he'll probably start ordering her scans. So, toward the end of May will be a litle stressful again as we wait for results.
Something else very exciting happened here yesterday. I did Lyrissa's hair for the very first time in 15 months (and 19 days, but who's counting) :) Anyway, there are no words to describe the absolute pure happiness in this seemingly normal activity, but it was incredible. The last time I put pony-tails in her hair was the morning of January 5, 2005. We had to take them out that day for her very first CAT scan, and I must have kept those hair bands around my wrists for weeks, as they still had some of her beautiful hair in them. Shortly after that, she lost her hair. SO imagine the joy here, and Lyrissa looked beautiful!
Lyrissa and Nicholas got colds again, and slight fevers this time, too. But they got over them in one or two days, but not before spreading it to Daddy and Mommy!
They also had a great Easter, and we will post some Easter pics soon, too. Will update more on Monday, May 1, after her appointment. CLAIRE POSTED THE NEW PHOTOS OF ROO. PLEASE CHECK THEM OUT!
Saturday, April 8, 2006 6:43 PM CDT
Hello Everyone & Happy Spring! Thanks for continuing to check in on us and our "Roo."
Lyrissa had her doctor visit and labs yesterday and begins her sixth (and final!) cycle of Accutane on 4/11. Her labs looked great too! It has gotten to the point where Lyrissa doesn't even so much as flinch when the needle goes into her arm and draws out vials of blood, while a piece of rubber is tied tightly to her upper arm. Everyone in the lab is amazed and praises her, but it is sad in a way too. It reminds me that Lyrissa is no stranger to pain and suffering. Sadly, when I think about what can only be described as the "pure hell" she went through -- central line dressing changes which would rip the skin from her chest already tender and broken down from chemo, nightly GCSF shots into the muscle of her upper leg, and NG tubes pushed down her nose into her stomach -- a quick blood draw from her inner arm is nothing to her.
Anyway, we try very hard not to focus on the bad and painful memories, and stay busy by enjoying each day. The exciting news in our home is that our little man Nicholas was baptized last weekend in a beautiful ceremony! He did great! Also, Lyrissa and Nicholas' new swingset arrived yesterday and they have had so much fun playing on it.
We are meeting with the folks from Make-A-Wish on Monday to try and finalize what Lyrissa's "wish" will be. It is hard to get her to articulate a wish. When I asked her if she could have anything in the whole world what would it be, she replied, "Mommy." Now can you see why I am so in love with my little Roo? :) Anyway, after I asked her what else besides Mommy, she replied, "chicken." So as you can see, we are still not certain what her wish will be!
Lyrissa is so excited to be at home for Easter this year! Will post more soon. Also, THERE ARE BRAND NEW PHOTOS CLAIRE JUST POSTED TODAY!
Sunday, March 26, 2006 7:29 PM CST
Hi everyone! It's Claire, just back from a great trip to see Roo and Nicholas. Roo looks just like a miniature version of Halle Berry. Be sure to check out Margaret's last post on Lyrissa's birthday and check out the new photos from our visit!
Claire
Friday, March 24, 2006 8:25 PM CST
Happy Birthday to Roo!
Now it's Roo's turn to have a birthday, and what a special birthday it is!!! We have Roo here - healthy, happy, and turning three!!!
To make things even more wonderful for us, Claire and her family are here to celebrate with us!!! For the first time since before her diagnosis, Lyrissa gets to play with her cousins. It is so wonderful to see them play together. I really cannot describe the feeling of being in one room cooking, etc., and to hear sounds of Roo's laughter, her giggling and squealing coming from the next. The best way to sum it up -- pure joy.
Roo's days with her cousins have included trips to museums, playing hide and go seek, and doing lots of arts and crafts. Her birthday was spent swinging and sliding, opening lots of presents, and coloring all sorts of pictures. What a difference from last year's birthday of shots in her leg, TPN, and nausea. We take every day with great happiness.
In a few weeks a brand new swing set will be delivered to Roo's backyard, compliments of her Aunt Claire and Uncle Jim!
As far as her Accutane, we did eventually get it, and she will be completed this cycle on 3/28. It makes her feel real irritable and dries out her skin. We go for labs and doctors visit in early April. I'm not sure of the date yet, but will update soon. Will post some new pictures in the next few days.
Friday, March 17, 2006 9:55 PM CST
Happy First Birthday to Our Little Man Nicholas!
Yes, that's right, it has been a whole year since little Nicholas was born. I can't believe it! He certainly hasn't had the year I would have ever planned for him but he doesn't seem any worse off!
This update I'll share some memories of Nicholas!
My cheerful little man was always such a ray of light during Lyrissa's treatment. From the time he was just several weeks old he was in the hospital with us, through every round of chemo, every fever, her surgery, etc. When he was just three weeks old we were up at CHOP for her stem-cell collection, and he was there! He was with us through her transplant, and it's hard to believe he was only four or five months old then. He lived at the Ronald McDonald House for two months. He is really a trooper.
Nicholas never minded all the things he had to put up with. His stimulation as a baby was the beeping and lights of the IV pump. His friends were the nurses. I remember one day in the hospital, he was just sitting in his carrier in Lyrissa's crib just looking around. I suddenly realized he had no stimuli, nothing to look at like a mobil, etc. I felt so bad like he was not going to thrive or learn that I grabbed one of Lyrissa's yellow socks and draped it over the carrier handle!
I will always remember that just about ten days after his birth I had to leave him and go with Lyrissa to the hospital. I was so sad and I missed him, but my mom was up that week and kept him at my house. That was the second week of his life and we were apart, and I was miserable. But I laugh now when I remember Lyrissa's doctor coming in the room, probably delivering bad news that I didn't feel like hearing, and asking me, "So how is your new baby?" I just remember looking up at him, and snapping back, "I wouldn't know. He's at home right now probably turing into a serial killer since I'm not there to bond with him!" Poor Dr. Grffin.
Anyway, this year I plan to make up for all lost time with my little big man! He had a great birthday, but chose to spend the bulk of his day napping! Little rascal! He is truly a blessing. Happy Birthday, Nicholas..I love you forever....
Tuesday, March 14, 2006 7:59 AM CST
Well, here we are on Tuesday ready to start her fifth round of Accutane, and guess what - we don't have it! Yes, that's right, the iPledge system is not letting the pharmacist fill the prescription. Lyrissa is registered with iPledge, she has a card and an account number, but the iPledge system reports to the pharmacy that the "patient cannot receive the medication."
Our wonderful pharmacy and poor Dr. Griffin have been working diligently to figure out what's wrong, but no luck so far. To make matters worse, everytime either one of them tries to get an actual person via the phone at iPledge, the recording says the system is too busy now.
I forgot to mention last update that we saw our friend Grace at A.I. last week. In fact, both of our friends and fellow neuroblastoma warriors, Grace and Jada, continue to do great! Jada is loving gymnastics, and Grace is preparing for her Make-A-Wish trip to Disney World. Please continue to pray for Lyrissa, Grace, & Jada that they remain N.E.D. forever!
Also, I must say a special thank you to all who donate blood. I was reminded of it the other day when I received something in the mail from the blood bank. Lyrissa's life was literally saved from the dozens and dozens of blood transfusions she received during treatment. During transplant especially, Lyrissa received countless blood products; whole red blood, platelets, and fresh frozen plasma. Donating blood is really a gift; I never realized how much before. It takes time, energy, patience, and sacrifice. So THANK YOU, to all who do it!!
IF YOU HAVEN'T DONE SO ALREADY, CHECK OUT THE NEW PICTURES
Sunday, March 12, 2006 4:55 PM CST
Check out the new photos!
Thursday, March 9, 2006 9:00 PM CST
Hello & Happy March! Lyrissa had clinic visit and labs today; her labs were great. They said Lyrissa's labs could have been those of a kid who never had anything happen to them medically, so that was good to hear. And, can you believe that brave little Roo doesn't even cry when she gets a blood draw from her inner arm!
As for the HVA/VMA urine, the results are still not back. But we looked over all of Lyrissa's past HVA/VMA urines, I was surprised to see that her HVA and VMA were actually NORMAL at the time of diagnosis. Just as not all elevated HVA/VMA levels mean neuroblastoma, not all neuroblastomas have elevated HVA/VMA levels. So that may mean that that is not even a good marker for her anyway..who knows?
Now the saga of getting the Accutane continues. The makers of Accutane now require every doctor, pharmacy, and patient to register via this internet system called iPledge. Well, apparently Lyrissa is the first person at A.I. since this went into effect this month, and Dr. Griffin could not get into the system. So they let us leave with an RX which had a special note to the pharmacy and the old yellow certification stickers they used previously. I knew it wouldn't work, because my pharmacy already told me to tell Lyrissa's oncologist that he has to get her registered with iPledge, or there is no way he can fill it. So, as I am almost home at a toll booth, I get a call from Dr. Griffin who tells me he finally got into the system and got Lyrissa registered. The bad news was there are a million different legal forms I have to come back up there and sign tomorrow! I have to sign consent forms to guarantee that Lyrissa is not pregnant and they are doing pregnancy tests prior to each prescription! That's what the whole iPledge system is for. Not safety, etc., but all about pregnancy prevention while on Accutane. The problem is Lyrissa is not even three yet, but that doesn't seem to matter; she still has to go through this system. Can you believe it? It's true.
Lyrissa will start her fifth round of Accutane on 3/14 and then back to A.I. in April for labs and doctor visit. Right now, Lyrissa has a cold she got from Nicholas. Believe it or not, it is the first cold she has had since BEFORE her diagnosis!
Anyway, we got to see our wonderful friends - the staff on 3A who took such good care of us last year. They helped me so much especially when Nicholas was a newborn. We have a picture they took of Lyrissa, Nicholas, and I sleeping together on a pull-out vinyl couch. Roo is hooked up to a million things getting chemo, and Nicholas' little head is barely visible; he was only weeks old. When I see the picture I just think, well at least we were together.
A lot of people have told me to update pictures; I promise I will put some on in the next few days!! Thanks for the continued support.
Tuesday, February 28, 2006 8:07 AM CST
Well, it seems that Lyrissa's ballet career has come to a sudden halt (at least a temporary one). :) Lyrissa has decided that she is not going to attend ballet, at least for now; as everytime I ask her if she wants to go, she replies, "No, not today. Maybe tomorrow." Okay, Roo....
Anyway, the dentist found that Lyrissa has one cavity, but when and if it will be filled will be up to her transplant doctor. The dentist said it can wait a little while. After Lyrissa's dental visit I took her and Nicholas to lunch, where Lyrissa somehow managed to climb from the booster seat out of the booth and tumbled onto the floor, causing a HUGE black and blue lump on her forehead. She is catching up on the daredevil things she missed during the last year.
Lyrissa's recent urine test to check her VMA and HVA levels (indicators of neuroblastoma) shows the HVA is AGAIN elevated!! This is most likely because of her consumption of bananas and orange juice, since she JUST had clean scans. I really was not careful in restricting her diet this time. (You may remember we had this same problem in late November). It is very frustrating because it creates a little tiny worry in the back of your mind. So, now Lyrissa is off of all bananas and orange juice until Friday when I am going to bring yet ANOTHER specimen to A.I. Please pray that it is just a dietary issue and that Lyrissa continue to remain N.E.D.
Lyrissa finished her fourth round of Accutane last night! Now she is off for 14 days before she will begin cycle five. Lyrissa returns to A.I. for labs and doctor visit on 3/9, and hopefully her urine results will be back by then.
Roo is continuing to fully enjoy life! She had a great time visiting the Baltimore Inner Harbor and spending time at Port Discovery which is a huge children's museum with all sorts of fun things to do. She also enjoyed visiting the fish at the National Aquarium.
BUT, the very exciting thing in Lyrissa's life is that Lyrissa is now a "Big Girl!" Lyrissa is completely potty-trained! Go Roo!!
Tuesday, February 14, 2006 8:58 AM CST
Lyrissa had her labs and doctor visit yesterday, and thankfully her triglycerides are back to normal and she can restart her Accutane! We're glad about that because the Accutane is thought to mature any remaining neuroblastoma cells, that is, turn them into benign cells. She starts her fourth cycle today for 14 days on, then 14 days off, then two more cycles.
It's a good thing her triglycerides were normal again, because if not, Dr. Griifin said he was going to have to refer her to a cardiologist to figure out some medication she could take to keep them normal, just so she could get back on the Accutane. This time, they had her fast before her labs. Maybe that made the difference?
Tomorrow Lyrissa is going to the dentist to get her teeth cleaned and to see what damage, if any, the chemo did to her teeth. She goes back to A.I. for labs and doctor visit in four weeks.
As for Lyrissa, she just continues to explore and try new things! Her last weeks have consisted of trips to the library (Lyrissa is addicted to Dr. Seuss!), building a snowman, and jumping off the couch getting a bruised knee! But the most exciting adventure of all was Lyrissa's first ballet class! Yes, that's right, Roo is taking ballet! We found a class that only has one other child in it this session and signed her up. Lyrissa seemed intrigued by it, but a little shy. That's okay - I am going to keep trying as long as she is willing to go! Like everything in Lyrissa's life, we continue our philosophy of NEVER giving up on Roo!
Last Valentine's Day, Lyrissa had red and pink balloons to look at as she lay in her hospital crib, receiving her second round of chemotherapy. Today, she is outdoors in the sunshine and playing in the snow! What a miracle!!!!
Sunday, February 5, 2006 9:14 PM CST
Fun & Happiness Update!
Lyrissa had her first playdate! She played with her godmother Kathleen's children at their home and had a blast. We wondered how Roo would do after being away from kids for so long. She was shy at first - a little withdrawn and fearful. Within no time, however, Sean and Kara made her feel welcome and comfortable by sharing all their toys and being so kind and sweet to Roo!
Roo's fun playdate was filled with lots of tea-parties and toys. Her day was topped off with a surprise special cake and balloon to congratulate Roo on being off her precautions! We even had ice cream and candles. Instead of singing happy birthday, we said a prayer to God to be so very thankful that Roo can again be with Kathleen and her family. Roo and Kara are only three weeks apart; they played together as infants. We both longed for the time they could play together again.
The highlight of the day had to be watching Roo and Nicholas bouncing and jumping on the bed with Sean and Kara. The laughter and the smile on Lyrissa's face was priceless. A very special thanks to them for making Lyrissa's day! We took lots of pictures, hopefully we can post some soon!
Friday, January 27, 2006 6:23 PM CST
Hello! Sorry for the delay in updates but we had so much going on this month.
On January 10 we visited Lyrissa's transplant doctor, Dr. Grupp, at CHOP. He agreed, Lyrissa is doing great! The good news is, many of Lyrissa's precautions are now lifted! She is now six-months post-transplant and we can take her most places AND remove her mask. But, the most awesome news of all is that Roo can play with a few other kids!! That is tremendous news for our family and so exciting. No daycare, playgroups, preschool yet, but one or two (healthy) friends is okay! We are so happy that our Roo can again begin enjoying friendships and regaining her social skills. She bloomed in daycare prior to her diagnosis, and I hope she will rediscover that part of life, and come out of her shy little "shell." She is fearful; she has been hurt so much. :( Dr. Grupp will begin her re-immunizations probably at one-year post-transplant (July).
The weekend after that, we headed to Connecticut to visit Roo's great-grandmother. We had a great time - our first time away since her illness (unless you count our fun-filled summer vacation at CHOP :) BUT....wouldn't you know it - as soon as we expose her to the world...the day we left Connecticut poor Roo woke up vomiting! She had a classic stomach bug that most of us are over in about a day or two. Unfortunately, Lyrissa did not feel too great for about a week. The transplant staff at CHOP told us this is normal. We hated to see her sick after she has enjoyed such a long stretch of good health. But that's life; we have to get used to it.
Despite her stomach bug, they were still able to perform her CAT scan and bone scan last week. Both were negative for disease!!! Just today, Lyrissa had her MIBG scan (to detect any neuroblastoma cells) and we learned that was negative for disease as well! Thank you God!
Also today Lyrissa had labs and a doctor visit. She had just started her fourth round of Accutane (cis-retinoic acid) yesterday, but her labs today showed her triglycerides were elevated, so Dr. Griffin stopped her Accutane for now and is going to re-check everything in two weeks. All her other labs were pretty good..still a little low in some areas which is normal. One of her scans also showed that a gland called the thymus has returned. Apparently this is a gland which helps to fight infection, but will be destroyed from chemotherapy (temporarily). Amazingly, Lyrissa is no longer on ANY medication! Since she is six-months post-transplant she is now off the Bactrim which was a preventive measure against pneumonia. (But she gets drops of SSKI for three times a day two days before and five days after her MIBG scan to protect her thyroid from the dye).
Lyrissa continues to enjoy life and is growing every day. It seems little Roo went from a toddler to a little girl during her treatment. Emotionally sometimes it seems she went from a toddler to an adult; she lost a lot of her innocence.
Will update more ASAP, and definitely after her mid-February labs! Thanks for all the prayers for her clean scans. We are blessed to have Roo!
Saturday, January 7, 2006 9:17 PM CST
This past Thursday, January 5th, marked the one year anniversary of Roo's diagnosis. The day life changed forever. We are very lucky to have Roo where she is today.
So that day was a chance to celebrate Lyrissa's life, and as such we decorated a little "angel tree" for Roo. While Roo was up at CHOP this summer, we received a little crocheted(sp?)angel in the mail almost every day from a different person, all from different parts of the country. They are called "Angels For Hope." We put them all on a little three-foot artificial tree with white lights. God willing, we will do it every January 5, to celebrate yet another "gift" of a year with our Roo!
Well this Januay 5th was a bright and sunny day, unlike the freezing cold rainy day of last year. Roo enjoyed her day completely, as she had pancakes with daddy, wagon rides with her baby brother, bubbles outside with big brother, and later finger painting with mommy. Roo rounded out her day with a fun splash in the tub, tubie-free, which we never take for granted! And of course, lots of snuggling and hugs and kisses (just like every day)! :)
We have a very busy schedule this month. January 10 we go to CHOP for a follow-up. January 20 Lyrissa goes for her bone scan and CAT scan with sedation. January 26 she will get injected for her MIBG scan for the following day January 27, also with sedation. Then she will also have labs and doctor visit. Please pray for all clean scans for Roo and that she remain N.E.D. FOREVER! Thanks.
Friday, December 30, 2005 9:00 PM CST
Lyrissa's appointment on 12/29 went well; her platlets are still somewhat low but not unexpected. Dr. Griffin thinks Lyrissa is doing great! January will be very busy for us, as we have her MIBG, bone scan, and CAT scan, along with a visit to CHOP for a follow-up, and her monthly doctor visit and labs. Next week I'll know her testing dates/schedule and I will post more info.
They're also watching her triglycerides which can be elevated by the Accutane (cis-retinoic acid). They don't want them higher than 300 and hers were at 249, so she is okay for now. She is now in her third cycle of Accutane. Lyrissa was also very brave for her needle stick for the blood draw. Roo handles her "ouchies" like such a big girl!
We had a fabulous Christmas! Our biggest gift of all is to be home and have Roo doing so well, and also to celebrate Nicholas' first Christmas. Santa brought Lyrissa and Nicholas some wonderful things, including a big kitchen and a big red wagon just like at the hospital! :) Roo has been busy "cooking" things for all of us, such as plastic pizza, one strawberry, and a tiny little steak!?
We hope everyone has a nice New Year. As much as we have had to endure in 2005, the first thought is to be quick to say good-bye to such a terrible year. But instead, we are choosing to think of it as a good year - the year that Lyrissa's cancer was discovered BEFORE it was in her marrow, thanks to her incredible father, the year that she responded to treatment, had a successful surgery, and survived the stem-cell transplant that almost took her life. It was the year that she made it to N.E.D., a status that sadly many neuroblastoma children never reach. And who could forget, it was the year that our beautiful sweet dollbaby Nicholas was born, a little angel gift who has also endured so much yet always has a smile on his face.
It was also the year that we received so much from so many people in so many different ways and we thank everyone for all you've done for us. Happy New Year!
Friday, December 23, 2005 4:39 PM CST
I am happy to report that Lyrissa's heart tests were normal; they remain unchanged from before her transplant. Her hearing tests revealed hearing loss - the chemo drugs carboplatin (sp?) and cisplatin caused it. What's next is a more specific hearing test (with sedation) which will measure the exact amount of damage and loss in each ear and Roo may need hearing aids.
We notice some hearing loss in Lyrissa sometimes, and it seems hard for her to hear if she has other stimuli going on. For instance, if you try to talk to her while she is listening to something else, she often doesn't respond. Maybe she is just ignoring us??? :) Believe me, Roo is not going to let a little thing like hearing loss stop her. She still has me driving around blasting Barney, she sings, dances, climbs, laughs, and yes, is even ornery! We love every minute of it!!
Lyrissa and Nicholas had a very special visit from Santa on a fire engine, and Roo was amazed to know that Santa "knew" her name! Now, she pretends to call him on her play phone and asks him to come back with more candy canes. Lyrissa has enjoyed touching and shaking lots of presents but frequently reminds Daddy "no peeking" at his gifts she helped to wrap.
Her next appointment is for doctor and labs on 12/29, and that is also the day she starts round three of Accutane.
We wish everyone happy holidays and thanks to all for the support and prayers!!
Monday, December 12, 2005 2:29 PM CST
Just a quick update to share the good news that Lyrissa's repeat HVA and VMA test came back normal! (Yes, I broke down and dropped off a new specimen last Thursday). We are so relieved.
Lyrissa's last week consisted of lots of drives looking at lights and putting up our Christmas tree. She had lots of fun. She is going to finish round two of Accutane on Wednesday. Thursday she has a hearing test, and EKG, and an echocardiogram at A.I. I'll post the results when we know them. More soon..
Monday, December 5, 2005 9:22 PM CST
Lyrissa is doing well so far with her second round of Accutane. It can cause leg (bone) pain and today she told me her leg hurt. (It is so fun now because Lyrissa speaks in complete sentences - instead of just saying one or two words). She talks up a storm. Her favorite thing she says now is, "Hey Mommy, "rainbow" this?" She means "remember" this, but she says "rainbow" instead! Also, she thinks the word for "ribbon" is "ribbit," like a frog, so she'll say, "Mommy tie my ribbit!" :)
Anyway at our visit last week, Lyrissa had her urine checked for her HVA and VMA levels. These are levels of hormone (called catecholamines) which are often elevated if neuroblastoma is present. Today the nurse told me that the VMA was normal but the HVA was slightly elevated. She said Lyrissa's primary oncologist isn't concerned; he is just going to repeat it at our next visit on 12/29. ALso the lab noted that the specimen was "dilute" and so the results can be unreliable.
The letter 'V' in HVA and VMA stands for vanillymandelic and they tell you not to have anything with vanilla in it beforehand as it can elevate the numbers. There are other things which can elevate it, too, one of them is citrus fruits. Lyrissa drinks lots of orange juice all day and throughout the night. In fact, it is the only beverage she will drink. I hope that is why it was elevated. Next time, we'll eliminate it for a few days before the test.
But who wants to worry about that for the next few weeks??? Yet what can we do but try to think positive, this is our new way of life for the next few years. Waiting, wondering, hoping, and praying. She is not due for scans until after the third round of Accutane which will be late January. Lyrissa's doctor doesn't take things lightly, so if he isn't worried about it, I guess that's a good sign. Let's hope!! More soon..especially if I break down and get them to re-check her urine levels prior to our next visit! Just for peace of mind :)
Wednesday, November 30, 2005 9:31 PM CST
Happy December! Lyrissa went to a check-up with the radiation doctor yesterday, as well as a visit to her primary oncologist at A.I. Everyone agrees - Lyrissa is doing great!!
As for her labs, they are holding steady with her red blood and platlets still just a little bit on the low side which is normal and expected after transplant. Her liver functions have improved, they are pretty much back to normal now. As for her weight and eating, she is doing really well and no longer takes the appetite stimulant. They gave me her growth chart and she is in about the 50th to 60th percentile for weight and height; she is a whole three feet tall now! Go Roo!
Well, I had her Accutane time frame wrong. Roo will actually be on Accutane (cis-retinoic acid) for SIX months, not three. They call it two "cycles" with each cycle consisting of three months. Maybe that's how I confused it???
Anyway, Lyrissa's doctor is really frustrated with the red tape involved in getting the Accutane prescribed. And as of January 1, he tells me they will have to jump through even more hoops. This is all because it causes birth defects if taken while pregnant, and it is often taken by teenage girls for acne. Her doctor tried to spell it out on the prescription form that Lyrissa is two and is being treated for neuroblastoma, but the pharmacist doesn't think it will work. The doctor is going to have to go through a whole computer program to "register" Lyrissa each time we get it (each month.) Well, she is due to start her second round tomorrow so I hope the pharmacy was able to get it for me!
The good news here is that Lyrissa can have a real (live) Christmas tree! The precautions have changed (per CHOP) and now real trees are okay to have!
Roo is having lots of fun watching Christmas shows, singing and dancing, and making all sorts of things with Play-Dough! She is currently covered with "tattoos" that she and her older brother (her idol) have so much fun with.
Thanks for continuing to keep us in mind. Please pray for N.E.D. forever for our Roo! Thanks.
Monday, November 28, 2005 8:53 PM CST
Check out the new photos!
Monday, November 21, 2005 10:58 PM CST
Lyrissa is still feeling good and enjoying herself. She is off the Accutane until the next round and also now completely off the appetite stimulant. The only medication Lyrissa now takes is Bactrim, only on Mondays, Tuesdays, and Wednesdays as a preventive measure against pneumonia.
Next week Lyrissa goes to AI for a doctor visit and labs. She will need to get a needle stick because she has no line ("tubies") anymore. Roo will be a little upset, but for the most part Roo is real tough. She is also going to have a follow-up visit with the radiation doctor at Christiana just for a check-up.
I think that she will probably need to have another set of scans again next month (bone scan, CAT scan, MIBG scan). (Ugh - the fear of waiting for results). I think she will get them every three months for a while but I am not 100 percent sure about that. On December 15, she is having two heart tests (EKG and echocardiogram) and her hearing test.
This weekend Daddy helped Lyrissa climb all over the jungle gym at the park, something we have not seen her do in quite some time. Usually she is just content to swing, but she is getting her confidence back slowly but surely and even went down the slide. I have some good pictures which Claire is going to post for me because for some reason my computer won't let me.
Thank God Lyrissa is home for Thanksgiving, and we are so grateful for that. She was in the hospital for Valentine's Day, Easter, Memorial Day, Labor Day, etc., etc. Right now we are really just happy to be home, out of the hospital, and be together.
I am very sad to report that our friend Liam passed away, after battling neuroblastoma since April of 2004. He was a five-year-old little hero. Please continue to keep his family in your thoughts/prayers. Thanks
Tuesday, November 15, 2005 10:10 PM CST
Lyrissa is almost finished with her first round of Accutane! Tomorrow is day number fourteen of the first cycle. Then she'll be off for fourteen days until cycle number two begins. I am trying to slowly wean her off the Megace (appetite stimulant) as well, because her eating seems to be improved.
Lyrissa's bone marrow continues to be clear - free of disease, thankfully! Her kidney test last week showed her function to be "low" but the doctor did not seem too worried about it. Apparently they are going to begin hydrating kids overnight the night before the scans, because a lot of them had the same results.
She still has to get her EKG, echocardiogram, and hearing tests done.
Lyrissa and Nicholas had a very special treat today. Kiddie Kandids, which is a photo studio inside Babies R Us stores, generously opened the store early this morning, just for Nicholas and Roo so they could have their Christmas pictures taken together before the store filled up with kids! It was the first formal photo of Roo since her illness, and the first one of them both together. Thank you Kiddie Kandids!
Sunday, November 6, 2005 8:51 PM CST
Lyrissa is again (and hopefully forever) tubie-free! That is, she had her PICC line removed Friday following her six-hour kidney scan. She has been enjoying lots of splashing in the bath!
She started the Accutane which she will take for 14 days, then 14 days off for three cycles. They are in pill form, and it has been too difficult to get her to swallow them whole (two in the morning and two in the evening). We are now puncturing them and putting them in baby food fruit. Lyrissa understands this, but just calls it her peach medicine, instead of her "big girl pills."
The Accutane makes her face very dry, but no other serious side effects. It is supposed to bind itself to neuroblastoma cells, cells which we hope and pray were wiped out with the last nine months of aggressive treatment!
We have been VERY busy. We have been busy with medical appointments, but also very busy having fun and enjoying life. Lyrissa has been enjoying parks, car rides, a trip to the car wash (to see the cars "take showers") and lots of long walks during which she pushes her Teletubbies in a toy stroller! It is amazing to see her thrive, smile, grow, and learn.
Please continue to keep five-year-old Liam Kane and his family in your thoughts and prayers. Thanks.
Tuesday, November 1, 2005 2:29 PM CST
Happy November - Lyrissa had her labs drawn yesterday and I am so happy to say, her liver functions appear to have returned to normal. Today Roo was up at A.I. at 6 a.m. for her bone marrow aspirations! Roo is tired!
Hopefully her PICC line can be removed Friday after her six-hour kidney function test.
Sorry no pictures to post for Halloween. Both of these little rascals refused to wear their costumes, but Roo elected to "help" give out candy. I am happy to report that she even tried some M&Ms! I am probably the only mom of a toddler happy about that! Lyrissa has no dietary restrictions, but is always hesitant (scared?) to try new foods. There are only about five or six things she eats on a regular basis. So while I wouldn't want her eating candy all day long, I want Roo to experience all the pleasurable and fun things about being a kid. And in my opinion, eating M&Ms is VERY important, right Mom? :)
Once the pharmacy gets her Accutane today, she is going to begin taking it for two weeks on, then two weeks off for three cycles.
Lyrissa got a special bag of surprises at A.I. yesterday, including a big stuffed turtle which made her so happy!
Monday, October 31, 2005 6:02 AM CST
Lyrissa is happy to be through with radiation. She had a great weekend, and enjoyed her godmother Kathleen's visit to see her.
Lyrissa has a very busy month ahead. This week has her at A.I. three times! She is having a doctor visit with labs Monday, a bone marrow aspirate procedure on Tuesday, and a six-hour GFR (kidney function) test on Friday! Please pray that her bone marrow remains clean, free of disease as it always has been.
Also this month, Lyrissa will undergo both an EKG and an echocardiogram, a hearing test, and possibly vision as well. These are just to check her post-transplant recovery. She will also have a follow-up appointment with the radiation doctor. The radiation nurse informed me on Friday that her liver function came down a little bit! What good news that was.
Her PICC line is still in, since they are going to continue checking liver functions every few days. We'll also need it for Friday's kidney function test, as they draw blood each hour for the six hours.
Hopefully I'll have some good Halloween pictures to post, but I don't know - Lyrissa refused to put on her Cinderella dress and insisted on wearing her glass slippers OVER her sneakers, and Nicholas is a very unhappy Scooby Doo in his suddenly too snug costume! He is busting at the seams and Lyrissa is miserable - go figure! I see some scissors, white pillowcases, and two little ghosts on the horizon..... :)
Wednesday, October 26, 2005 9:16 PM CDT
Lyrissa is through with radiation! Go Roo! She was supposed to have one more day (tomorrow) but today's lab values show her two liver enzymes to have increased again, so they just decided to stop now. All of Roo's doctors are currently at the Children's Oncology Group conference in Dallas, Texas. After getting the lab results for today, the radiation doctor got a hold of the others at the conference and they decided just to forego the last day of radiation. He called me tonight. They tell me they are not sure what her numbers mean, but they don't routinely check these numbers in patients receiving radiation anyway; they suspect that everyone's probably show some liver damage. Lyrissa's levels have now doubled since her baseline testing, and with her history of V.O.D. they are being cautious. Her doctor thinks the numbers may continue to go up some more as the effects of radiation continue after treatment, but then they should level off and gradually return to normal. Please pray that this is the case.
The good news here is that since Lyrissa is more than three months post-transplant (her transplant date being July 20), some of our rules can be relaxed regarding her immune system. No longer will visitors have to wear masks as long as they are healthy, although they still do not want children visiting. Also, Roo can now go to a few uncrowded places but during the "off" hours, when other children are in school. For example, Roo could go to a movie or a grocery store on a weekday afternoon. But because this is also the beginning of flu season, the precautions are not as relaxed as they would be at another time of year. Things like Christmas shopping at a crowded mall, a child's birthday party, etc., are still out. We take no chances with our precious Roo, and (as anyone who knows us knows) follow the hospital's rules very strictly. This is not because those rules are any guarantee that Lyrissa won't get sick. She could catch a bug anywhere. No, we follow them because IF she did pick something up, we could not blame ourselves. It is one of the very few things we DO have control over in this process of helping our daughter heal. We want to give little Roo every fighting chance we can!
We will miss the nice staff at Christiana, where Lyrissa got her radiation every morning. Even though it was no fun dragging her and Nicholas out of bed very early and driving up there, they made it better for me, and today gave Lyrissa a beautiful Cinderella outfit which is so special! These very hard times with my kids just make me closer to them and we always manage to get through it some way or another. Thank God they're both such good sports!
Please pray that Roo's liver is okay. She should begin Accutane on November 1. Thanks!
Monday, October 24, 2005 6:45 PM CDT
Well, today at radiation they again drew labs and the doctor called me later and said the lab values (regarding her liver enzymes) had gone up AGAIN slighly. He had then called her primary oncologist at DuPont and her transplant doctor at CHOP. He told me that her transplant doctor found the numbers to be "neither concerning nor encouraging." I'll work on figuring that one out later! :)
Well, their plan is to continue checking her labs and continue with the radiation. As I mentioned before, I am told that the particular liver enzymes in question are more consistent with some mild liver damage, not liver blockage or failure. Her bilirubin is normal.
Lyrissa remains happy and seems to be feeling good. I love it! Next week she will have a six-hour kidney test (routine) and a small surgical procedure to check her bone marrow again. For now she is enjoying "medical play" (giving pretend shots, checking blood pressure and temperature, etc.) and guess who is her favorite patient - poor Nicholas! :)
Saturday, October 22, 2005 1:32 PM CDT
Yesterday when Lyrissa arrived for radiation, they told me that one of her liver functions had increased very slightly. It is apparently one of the the liver functions which could indicate possible damage/injury to the liver, but not necessarily blockage in the ducts, such as veno-occlusive disease. I really don't understand it completely. But the radiation doctor had talked with her primary oncologist, and they've decided to re-check her labs again Monday. They are really looking for a trend, not just one day of a slight elevation. If it has gone up more, they may stop her radiation. She has four treatments left - next Monday through Thursday. Let's hope her liver holds up. We have flashbacks of those terrifying days at CHOP.
On November 1, 2005, if all goes as planned, Lyrissa will begin her Acctane (retinoic acid), which she will take for two weeks, and then be off for two weeks for three cycles. I will post more about this treatment, but it basically is thought that it is one more way to attack any possible remaining neuroblastoma cells. They are in capsules which can only be taken by chewing or swallowing whole (as an adult would), or possibly puncturing it and putting the liquid inside something else. We will have to consult with our friends Jada and Grace for some good ideas!
In the meantime, we are having lots of fun enjoying Lyrissa &Nicholas and our first extended period of time at home since January!
Monday, October 17, 2005 11:24 PM CDT
So far, so good on day number four of Lyrissa's radiation. Following her radiation this morning, we went on to A.I. for labs and doctor visit. They drew additional labs to check her liver so we should know soon how well her liver is tolerating the radiation. We have not yet noticed too many side effects - if Lyriss is extra tired it could be because she has to be up every morning by 6:30 for her hour-long car ride to the hospital! I bought her a Barney CD so she can listen to her favorite songs on the way. I am wondering if I made a mistake; Lyrissa screams from the back seat like a drill sargeant, "Louder!" :)
Lyrissa had a great time with her Auntie C who spoiled her as usual!! We love her!
Please say an extra prayer for a little boy we have come to know, who is also battling this terrible disease. Liam is a little fighter with a wonderful family. They are going through some very tough times right now, facing things no parent should ever have to. Please include little Liam and his family in your prayers. His website is www.liamjameskane.com. Thanks.
Thursday, October 13, 2005 11:49 AM CDT
A quick update - we have been so busy. Lyrissa began radiation yesterday - it is for twelve days straight with weekends off. We are told to expect some nausea, tiredness, maybe skin irritation. So far, the hardest part is the sedation aspect - Lyrissa becomes extremely agitated upon awakening. Each day, they will have to use more and more sedation med as she becomes resistant to it. This is so much fun for Nicholas and me - ha! :)
All of the doctors (radiation, oncology, transplant, and even the study doctors) have determined the best way to radiate "Roo" to minimize liver involvement. Please pray that Lyrissa's liver functions remain normal, and that she does not have to suffer any additional discomfort during this time.
Unfortunately, it seems that Roo AGAIN has C-Diff! This is the third time!! I am supposed to pick up a new med today that infectious disease hopes will take care of it once and for all. Yesterday the pharmacy didn't have it so they ordered it.
Anyway, as for Roo and Nicholas, they had a great trip to the beach on Sunday, and I will post a picture soon. The great news here in the Bray household, is that we have a very special guest visiting us. Claire is here! Lyrssa is having a great time enjoying her wonderful "Auntie C!"
Saturday, October 8, 2005 9:53 PM CDT
Lyrissa is feeling great and totally enjoying being at home! She got to pick out a pumpkin yesterday and she really enjoyed that. (Our pumpkin is probably the cleanest in the state. The poor thing has been thoroughly saturated with anti-bacterial wipes, alcohol, and just about every cleaning agent you can think of! It is a miracle it is still orange!)
Lyrissa has informed me that she would like to be "Gwilla" for Halloween. No not a gorilla. "Gwilla" is how Lyrissa says "Cinderella!" Nicholas is looking forward to donning his new Scooby Doo costume.
As for Lyrissa's radiation, there has been a slight delay. It seems that radiation carries a small risk of veno-occlusive disease (V.O.D.) if given to to the liver. In Lyrissa's case, some areas of the liver are in the field where they will be radiating, so the doctors are trying to determine how much, if any, real risk is posed to Lyrissa. (You may remember that V.O.D. was the liver problem that Lyrissa had at CHOP; the disease for which she had to take the special medication called Defibritide which was flown in from Boston.)
The thought of experiencing that type of ordeal again is dreadful, so we want to make sure that the benefits of the radiation outweigh the risk of the V.O.D. returning. Unlike other areas of study, the radiation data shows significant in reducing rates of relapse in localized neuroblastoma, so it is important that she receive it. Although there is no "evidence" of disease, (nor was there prior to transplant), I think the word "evidence" is the operative word. Meaning that, microscopic cancer cells MAY still be in that area. That's a chance we don't want to take. Lyrissa's type of tumor is sensitie to radiation, so we hope that they will figure out a way to minimize her risk of serious side effects but yet still allow her to receive it. As with everything, in the end the final decision is probably going to have to be made by us; just one more decision involving your child you never in a million years would imagine you'd have to make.
We'll update more as we know it; in the meantime, Lyrissa will be at A.I. on Tuesday for labs and a doctor visit.
Tuesday, October 4, 2005 9:03 PM CDT
Lyrissa is doing great! We will probably start radiation next week. Claire posted another two new pictures!
Monday, October 3, 2005 9:55 PM CDT
CHECK OUT THE NEW PIC OF DADDY, LYRISSA, AND NICHOLAS!
Friday, September 30, 2005 6:51 PM CDT
Yesterday Lyrissa had her MIBG scan and her PICC line placed in her arm. She was sedated for several hours for the two procedures.
Today we learned that the MIBG remains clean - no evidence of disease. Thank you God!! The poor staff at A.I., especially the wonderful nurses in the Hem/Onc clinic; I stalk and pester them incessantly to check the computer for the results after all of her scans. Luckily, they are so patient.
Anyway, on Monday Lyrissa will arrive at Christiana Hospital at 7:30 a.m. for her simulated radiation (trial run) with sedation. Tuesday, she goes to A.I. at 8:30 a.m. for labs, a doctor visit, her six-hour kidney test (GFR), and a hearing test! Roo's busy!
Today her visiting nurse came out to double check her PICC line and give me new supplies.
Unfortunately, that stomach bacteria Lyrissa had (C-Diff) came back after she finished her antibiotics, so she is now on them again for another ten days. They told me this happens sometimes with C-Diff.
I have some new photos of Lyrissa and Nicholas, but am having trouble posting them. I will get Claire to post them if possible.
Thanks for continuing to keep up with us. Please keep praying that Roo remain N.E.D. forever! Thank you!
Monday, September 26, 2005 8:52 PM CDT
Lyrissa went for a visit at A.I. today and her labs are even better. She can now stop the intravenous drug Pentamadine (sp?) which is given every 15 days post-transplant to prevent pneumonia. She will now go back to taking Bactrim by mouth three days a week, which she has done throughout treatment, for the pneumonia prevention. Other than that, the only drug she is now taking regularly is Megace to stimulate her appetite!
This week is busy for "Roo," as she will go back to A.I., on Wednesday for her dye injection for the MIBG scan, and then again Thursday for the actual MIBG scan with sedation and the placement of her PIC line in her arm. Either Friday or Monday she will undergo what is called "simulation" at Christiana Hospital. This is the "planning" appointment for her radiation. She'll be sedated and they'll line up her body exactly how it needs to be for the radiation based her tests and scans before the tumor was removed. Then they'll place a small tattoo-type of marking on her abdomen. Everything must be so precise to protect the other organs.
Next Tuesday she is scheduled for a six-hour GFR kidney test at A.I. (routine) to measure the function of her kidney. Also, her primary oncologist has informed me that Lyrissa can now be reduced to being seen only once a week since her labs are holding!
We are delighted to see that our little Roo's head is getting darker and darker each day! Yes that's right - Roo's hair is returning!!! Her eyelashes are almost completely back.
Several nights ago, I had the most vivid dream during which I was doing Roo's hair again, just like old times! It was long, beautiful, and curly as before, and what a joyous feeling that was. No one should know the heartbreak of seeing their precious child lose their hair and their health because of cancer! I hope within my son and daughter's lifetime, there is a cure for childhood cancer!
Friday, September 23, 2005 6:18 PM CDT
Everything is going well for Lyrissa and Nicholas, and their schedules are slowly returning to normal. Nicholas is feeling much better, and enjoying his new experience with baby (jar) food!
Lyrissa's bone scan last week was negative for disease! Thank you God!! She will undergo an MIBG scan this week, ( a specific scan which detects neuroblastoma cells) and will have her PIC line placed in her arm to prepare her for radiation. Radiation should begin in the next week or two. In the meantime, Lyrissa's labs have been holding steady, and her platlets and hemoglobin have been rising on their own. She has still not needed any transfusions since September 9th! Lyrissa is now more than 60 days post-transplant! (Her actual transplant date was July 20th).
I owe many people thank-you notes. Please bear with me - I am working on them. Although nothing compares to being in the hospital, being at home has its own unique challenges and demands. Please know that not one thing has gone unappreciated by us. No matter what the act or deed, we have cherished each and everyone. Every phone call, every kind word, every prayer helped us immensely.
I must also update on our little friend Grace, who many of you prayed for during her transplant. I am happy to report Grace is doing great! She just celebrated her third birthday and was just given the okay by the doctors to have a puppy! Our other little friend and fellow neuroblastoma warrior, Jada, is also thriving, and just returned from Disneyworld!
Sunday, September 18, 2005 7:30 PM CDT
THANK YOU, THANK YOU, THANK YOU to everyone who made "Love for Lyrissa" a success. Greg attended and said it was wonderful! Our family is deeply appreciative to all who worked so hard and gave so much of their time for the event. Thanks to all who took the time to attend. Thank you for all of the donations, gifts, cards, and prayers for "Roo." The support and love of our friends has been immeasurable, and has been what has helped us get through. In turn, we believe Lyrissa is affected, and it is what has helped her heal and fight this battle. We cherish each and every act of kindness - THANK YOU TO ALL!
Update on Roo - Roo is doing really well. Last week, she caught a stomach bug called C-Diff. It is common to hospital environments and she probably got it from the hospital. Thankfully, she is taking an oral medication and is now feeling fine. As for her eating, she is doing great - no plans to use any feeds again at this time! She's been going to the outpatient oncology office about twice a week for labs, and so far has not needed platlets (or red blood either) since September 9th! Go Roo!! Our plans for this week include a bone scan with sedation, and she will also need another kidney and MIBG scan before she starts radiation. The doctors are still wanting Roo to get a line placed, but I want to wait until as close as possible to her radiation. Until then Roo has to endure a couple "ouchies" a week. Roo's brave.
Update on Nicholas - Poor Nicholas is sick! Can you imagine? He has spent his entire six months of life, with the last eight weeks straight in hospitals and never once caught anything. Then, only home a week and he gets a high fever. I was relieved to hear that his throat was infected and his ear was red. This may seem strange, why would I be relieved to hear that? Well, I guess because after everything we've faced with Lyrissa, a throat infection seems "normal." I can handle that! Also, you must remember, Lyrissa primary presenting symptom at diagnosis was fever. That fear as a parent never goes away, the memory of that terrifying day is never forgotten.
It is very challenging to try to keep Lyrissa away from Nicholas and his toys while he is sick. (If Roo catches it, it is an automatic hospitalization.) But we can't live in a bubble so I just do the best I can.
On a lighter note, Lyrissa looked happy as a clam as the doctor examined Nicholas. For once, it wasn't Roo getting poked and prodded! She sat in the chair like the cat that ate the canary, and just kept repeating, "No doctor for 'issa, no doctor for 'issa!" :)
Once again, thank you from our family from the bottom of our hearts!!! Margi
Tuesday, September 13, 2005 4:21 PM CDT
Lyrissa is still doing well at home. She went to the doctor's on Friday as well as today. She got a dose of platlets on Friday. Apparently, platlets take a while to fully recover; the body uses them up pretty quickly. She has been needing them every few days, so we expected to need them today too, but "Roo" surprised us again with a platlet count of 50,000! She was brave during her "ouchie" which is "Roo's" term for her IV placement and blood draw. (You may remember, Roo is now tubie-free! At least until radiation begins.)
Lyrissa's doctor is talking with CHOP and the radiation doctors at Christiana Hospital about when her radiation will begin, but he wants it to begin pretty soon. He also asked me if we are going to be participating in another study involving monoclonal antibodies, which are a form of mouse proteins. They are evaluating to determine if it is effective in attacking neuroblastoma cells. There is not clear data yet.
We have decided not to participate in that study, as it can involve extreme amounts of pain to the child and complete evidence is not yet available as to its effectiveness. We made a decision that Lyrissa has been through enough pain and suffering right now. We continue to pray that she remains N.E.D. (No Evidence of Disease) forever!! Lyrissa will receive accutane by mouth after she completes radiation, and I will update more on that later.
So far, no plans to replace her NG (naso-gastric) tube. She is eating pretty well on her own, but has begun Megace to stimulate her appetite. Hopefully, she won't need it too long, because it is a form of a steroid and Lyrissa's moods get a little affected by it.
I am thrilled to report that Lyrissa and Nicholas found a new favorite park, which is shady and NOT CROWDED, and Lyrissa went on the swings yesterday for the first time since July! During those dark days at CHOP we hoped and prayed for that, and here we are, our prayers answered!!!!!!
Thursday, September 8, 2005 10:16 PM CDT
It's official.....LYRISSA IS HOME!! We could not be happier! No surprise glitches happened, she got a dose of platlets, her IV removed, and now Lyrissa is thriving at home. She is finishing some oral antibiotics and taking one diuretic which they will stop soon.
Lyrissa has been eating pretty well on her own, but the feeds seem to make things worse. Tonight she threw up the NG tube when we started the feeds. This was after a day of eating pretty well, so it seems counterproductive! So now, with no NG tube, Lyrissa is REALLY "tubie-free!" Yay! Tomorrow Lyrissa visits her primary oncologist at A.I., and we will see if we can convince him to let us try no feeds and see how she does.
Lyrissa's next phase of treatment consists of three weeks of radiation. They want her to wait about a month before begininng to recover some more. She will go each morning (no weekends), get a small amount of sedation to keep her still, and then they radiate only the site where her tumor was. It only takes a few mintes, then a little while to wake from sedation, and that's it. Hopefully it will be nothing compared to everything we've already faced.
In order to sedate her for the radiation, she will probably need another line placed just for those three weeks, so they'll probably place a PIC line in her arm. For now, she will still get frequent labs drawn which involve minimal, short-term pain, but is a much better option than having plastic in her which is a source of infection. Lyrissa's body can't handle another infection now.
Now that we're home there are all sorts of precautions and rules that we, and everyone else who comes in contact with "Roo" must follow. These are rules that the hospital sets out designed to keep Lyrissa free from germs and bacteria, many of which are things that the rest of us are exposed to everyday. But our bodies have immune systems to fight them off. Lyrissa can't fight anything off, so it is crucial that we follow the hospital's rules. Lyrissa must wear a mask if she goes ANYWHERE for several months, and up to a year has to avoid crowds, malls, stores, church, etc.
For now, Lyrissa has no desire to be anywhere but her own home, but I like to take her on short car rides, and we've learned to do lots of things via the drive-thru, such as banking, prescriptions, etc. Lyrissa also likes me to drive her by a small pasture where two "horsies" live, and thankfully by the grace of God, the prayers of everyone, and the wonderful medical team dedicated to "Roo," Lyrissa finally, after eight long weeks, got to see her two horse buddies again today!!!
Tuesday, September 6, 2005 7:34 PM CDT
We interrupt this update to bring you the following BREAKING NEWS.......
If all goes as planned and no unforeseen complications arise.....LYRISSA BRAY IS OUTTA HERE TOMORROW!!!!!!!!!!!
Yes, you just read correctly - EIGHT weeks and ONE DAY later, this little miracle is getting her walking papers!
Lyrissa's recent days have been spent playing the playroom, WALKING on her own, and FULLY ENJOYING LIFE! Nothing could be better than seeing our little "Roo" smile and play again!
Of course we still have worries that we will be loading up our car tomorrow, only to see a doctor come running down to the parking garage, waving "Roo's" chart, saying "Wait, wait, we found one more thing!" Oh well. If that happens we are prepared. We will, of course, do what any responsible parents would do. We will step on the gas, break through the parking garage barrier, and fly down I-95 south faster than you can say "transplant!"
Will update tomorrow as we know it. Please pray for no surprises! (No bad ones, that is.) :) Thanks!
Thursday, September 1, 2005 5:43 PM CDT
Lyrissa played in the playroom again today and took fast stroller rides in the hallway, waving to Nicholas as he sat in his seat watching us zoom past. Lyrissa made me spin her stroller around and around and around and since it makes Lyrissa laugh, I would have done it all night!
Last night she had a hive/itching rection to her platlets and had to get Benadryl. We used to pre-medicate her with it, but tried without the last couple times. I guess we won't do that again. Then her NG tube (naso-gastric) tube was blocked so she had to have that removed and replaced. NOT fun for "Roo."
Lyrissa was scheduled to have another PIC line placed in her arm tomorrow. (Currently she just has an IV and they don't last long.) BUT, we think we are going to try to wait it out and see if the IV lasts and if need be, just have another IV placed. Having a PIC line placed is a surgery, and although minor, involves fasting, anesthesia, and most importantly another PIC line is another opportunity for infection. The only bad thing is she still has to get "stuck" for labs each day. BUT....rumor has it that we might (MIGHT) actually get out of here next week, and any line would be removed anyway! Can you believe it? Lyrissa will actually be going home without any "tubies!" She will be tubie-free!
I will post more as we know it.
Greg went to his hour and a half training on at home feeding with NG tubes today.
Wednesday, August 31, 2005 4:09 PM CDT
PLEASE CHECK OUT THE NEW PHOTOS OF LYRISSA AND NICHOLAS!
Tuesday, August 30, 2005 9:47 PM CDT
Don't worry - we are still vacationing here at CHOP :) Amazingly we have not yet been carted off in straightjackets!! The docotrs and nurses are working fast and furiously to get Lyrissa better, and I joke with them that it is primarily to get rid of mommy! :)
Lyrissa is feeling better despite her three infections. She had a CAT scan today to make sure no yeast had spread, and thankfully, it was clear. Lyrissa has had lots of fun playing today now that her medications are kicking in and she is feeling better. She dutifully wears her mask in the hallway and even walked a little today!
We have been told by several doctors and nurses that Lyrissa is a miracle. So as hard as it is to be here for seven (yes, SEVEN) weeks, we really do feel like the luckiest parents on earth!
Monday, August 29, 2005 8:23 PM CDT
If my sister gets out of CHOP without being arrested or going insane, it will be a miracle. Having said that, Lyrissa now has three, count 'em, THREE, infections!! One is yeast in the PICC line, so the line was taken out, which means Roo is stuck every time they need blood. She is still up playing until all hours of the night so everyone is exhausted (except Nicholas). But, it is nice to see her happy and excited about her toys! Her stomach seems to be handling the feeds well and they have the formula running at 25 (don't really know what that means) but it has to be at 50 to be discharged. Plus the 972 different antibiotics she is taking have to finish. I think part of the agony is the "waiting on the edge of your seat" each morning when the docs come around. We are not sure if they are going to say, "well Lyrissa now has a new complication." It seems like it's always something. So let's all pray that nothing else goes wrong and that Roo can be back in her own bed shortly.
Claire
Sunday, August 28, 2005 12:25 AM CDT
AAAAAARRRR! It's always something, isn't it???? Lyrissa now has a fever. She also has been experiencing the rigors (shaking) again but the docs think this has to do wih her fever. Blood cultures were taken and they showed a bacterial infection that Lyrissa has had before. She is now on antibiotics. She hasn't slept the last two nights, sometimes going to bed at 4 a.m. Needless to say, my sister and Greg are exhausted.
Make sure to check out the new photo of Lyrissa!
Claire
Friday, August 26, 2005 6:13 PM CDT
Lyrissa's ONLY obstacle now is her getting her feeds adjusted properly so that her stomach tolerates them. They have switched formulas and brought the rate down and then increased it slowly to help her stomach a little. She needs to be at the correct rate before they can consider discharge.
Next week we'll be trained on administering the feeds at home.
In the meantime, I am very happy to report that Lyrissa has been out of bed and PLAYING IN THE PLAYROOM! She is still wobbly and not wanting to walk much, but we're working on it. Most of all, we are so incredibly happy to have Lyrissa feeling better.
CHECK OUT THE NEW PHOTO OF "ROO" TAKEN THIS WEEK!!
Thursday, August 25, 2005 8:14 PM CDT
Hello. We are friends and co-workers of Margi, who have launched a hostile takeover of this website to bring you this special announcement:
We are currently organizing a fund-raiser, Love For Lyrissa, to assist the Bray Family, with expenses accrued from the illness of Lyrissa.
Margi and her family mean so much to us, and we are greatful that we can help out in any way possible, and we hope you can too.
Although Medicaid insurance covers a substantial portion of the medical expenses, a considerable amount of related medical costs and living expenses remain. A Beef & Brew will be held on September 16, 2005, between 7:30pm - 11:30pm at Mill Creek Fire Company, located at 3900 Kirkwood Highway, Wilmington, Delaware, where we will raffle/auction off donated gifts, and give the proceeds to Margi and Greg. Tickets for the event are $30 for adults and $20 for children 10 years or younger. The tickets must be purchased by September 5, 2005. Monetary gifts are also welcome.
Checks should be made payable to:
" Love for Lyrissa"
PNC Bank
ATTN: 901 Market Street Branch
P. O. Box 791
Wilmington, DE 19899-9976
Should you have any questions, or would like to order tickets, please contact Marty Durkin, Jack McDonough or Carol Sain at (302)252-2950. Secure credit card payments can be accepted for tickets and donations through "Paypal" (www.paypal.com), please contact Rhonda Bowman at (302) 573-6010 or (302) 438-8684 or rbow2400@cs.com for ticket orders and for Paypal information.
Most importantly, we greatly appreciate all the love and continued support that everyone has shown The Bray Family.
Love,
Friends of Love For Lyrissa
Tuesday, August 23, 2005 11:54 AM CDT
Lyrissa is off all of her oxygen and the doctors have stopped the Defibritide (liver medication)!!!!
Lyrissa is only receiving one small dose of a narcotic every 24 hours (by mouth), and this is only to wean her from the intravenous narcotic she had been on for so long to avoid withdrawl symptons. She is also receiving Reglen (an anti-nausea drug) by mouth four times a day. Those are the only medications Lyrissa is on now!! Isn't that amazing?
Lyrissa's still has an NG tube (naso-gastric tube) in her nose for feedings. You may remember our many struggles with TPN (intravenous feeding) last spring. That method of delivering nution is through the veins. It is high in sugar and can often cause yeast-related infections. It is also hard on the liver. And boy do I remember all of the hassles of administering TPN at home! The bags of milky-white liquid, injecting vitamins and zantac into the bags, priming the tubing, and programming the pump. All that and then we "attached" Lyrissa to an enormous adult-size back-pack that we had to carry behind her as she played! We worked very hard to get her off of TPN.
BUT, this is a little different. The NG feedings directly go into Lyrissa's stomach, not her veins, so it is much more "normal." Most importantly, it is essential that Lyrissa receive optimal nutrition now after all that her body has undergone. Even if she were to begin to want to eat regularly today, she would never be able to adequately meet her high nutritional requirements. So, most likely she will be going home on the NG feedings and maybe be on them for a few months. That's okay though; we will happily deal with that!
Lyrissa seems to be feeling much better. She has her days and nights mixed up, which is common after being in the ICU. She has me up at 2:00 and 3:00 a.m. coloring, reading, and doing arts and crafts. I am so tired, worn out, completely beat...and TOTALLY, COMPLETELY, ECSTATICALLY THRILLED to have my little "Roo" feeling better!
Please note that I updated the room number under the address. We are now in Room 9.
Saturday, August 20, 2005 10:04 PM CDT
Lyrissa is out of the PICU!! She was moved to a regular room on the Bone Marrow Unit late Friday afternoon!
This morning her bilirubin was down even more, indicating that her liver is functioning better and better. She is only on one half a liter of oxygen via a nasal canula. The doctor is going to keep her on the Defibritide (the experimental liver medication) a little longer. Many other positive signs continue...
God is great! We continue to pray, and ask for your prayers for a complete healing of Lyrissa. We have been so blessed by a total outpouring of love and kindness for our "Roo." People from all over the country (literally), many of whom we don't even know, have written us to offer words of support and comfort at this terrifying time. Thank you to each and every one.
Wednesday, August 17, 2005 9:39 PM CDT
Hi everyone. It's Claire writing tonight. I have some good news!! Lyrissa had an ultrasound of her liver and the reversal of flow has stopped and now the blood is flowing through her liver in the correct manner!! It seems that the drug is indeed working! Thank you all so much for praying for Lyrissa. We are cautiously optimistic at this point. She is still in the PICU, still getting feedings through an NG tube, and is still using devices to assist her breathing. Some of the fluid returned to her abdomen today, but the doctors feel this is okay. Apparently, it takes the body a very long time to recover from VOD.
Lyrissa was sitting up more today and asking for her "pizes" which means her presents and care packages ("surprises"). I have to thank a few people for making Lyrissa smile today. Thank you to the Lejeune, Supplee, Ross, and Wood (Jada) families for the great care packages and gifts! Lyrissa has loved everything (Margi too!). Thank you to Lyrissa's Godmother for the surprise visit and Barney videos. Thanks also to the great nurses at A.I. Dupont Hospital for the card they made for Lyrissa and also for visiting Margi, Greg, and Lyrissa at CHOP.
Margi wanted me to say a big thank you to those who have sent beautiful cards and messages of hope to the Bray family. They have meant so much to her and have really helped her get through the last month at CHOP.
Thanks everyone. Please continue to pray that Lyrissa's health will improve everyday and that she will never again have to suffer like she has over the last four weeks.
Tuesday, August 16, 2005 8:29 PM CDT
A liver specialist came to see Lyrissa today and determined that she needed to have the fluid removed from her abdomen so that it does not causes other problems such as infection. The doctors removed the fluid while she was sedated to have a PICC line inserted. Now comes the waiting game. There are about 3 different scenarios that could occur. Ideally, the fluid will not come back which means the medicine in working. The second scenario is that the fluid comes back but does so very slowly. This may also indicate the medicine is working somewhat. But the third scenario is that Lyrissa's abdomen fills right back up with fluid and that would prove that she is definitely NOT responding to the drug.
At some point in the next few days she will have another ultrasound of her liver to see if there are any changes.
Monday, August 15, 2005 6:56 PM CDT
I wish I had more positive news to give, but so far Lyrissa is not responding to the medication for the VOD. Her liver is still normal size but the ascites (fluid in her abdomen) has not decreased at all. However, among the 30-40f people in the research study who did respond to the drug, half responded in the 2nd two week period. So as my sister put it, it isn't hopeless but it's not encouraging.
Please continue to pray that Lyrissa will respond to this medication and that the fluid in her abdomen will resolve.
Tomorrow she is having a small surgery to place a PIC line in her arm for labs, meds, etc., and remove the uncomfortable one in her neck called an intra-jugular line.
Thanks again for all the cards you have been sending. Margi said Lyrissa was actually smiling today when they were opening them.
Claire
Friday, August 12, 2005 8:41 PM CDT
Hello everyone and forgive me for not updating. I am just trying to cope with each day, and hoping and praying that Lyrissa is slowly responding to the liver medication. Lyrissa is still filled with fluid, but the ultrasound confirmed that her liver is NOT enlarged, and that it is indeed fluid that is inside her body - in what they call "the third space."
Her liver function is, however, still decreased, but it apparently can take a long time to see significant results from this medication. Because of her fluid overload, her breathing remains compromised and she is on a nasal cannula with some minimal air pressue called "Vapotherm."
We are still in the PICU but Lyrissa is off a lot of the medications she was on. She is not sedated at all, and receives just a very small infusion of pain medication which they have almost completely weaned her from. Her arterial line in her arm was removed today. Her skin is looking better and better (with a little help from special mommy "spa treatments" I give her at night!) She is still the most beautiful girl in the world to me, and I am so proud to be mom to little wonderful, strong, brave "Roo!"
Thanks for so much support. Please, please continue to pray that my little angel never, ever again know such pain and suffering. Thank you! Margi
Wednesday, August 10, 2005 4:50 PM CDT
Hi again,
While my sister's spirits are still low, they did receive a tiny tiny bit of good news today. Lyrissa had an ultrasound of her liver and it looks like the VOD is slowing down a bit. It takes a long time to recover from it and we still do not know if indeed Lyrissa's liver will turn around and function properly. But we will take all the tiny positives we can get.
Margaret and Greg want to thank everyone for all their support. I know I asked once but I will ask again, please more cards!! Even if you have sent some, please send more! Opening the cards is a big ritual for Lyrissa. She opens them and looks at the pictures and then my sister hangs them on a bulletin board where Lyrissa can see them all day. This is a HUGE deal for my sister as well. It really, really cheers her up.
Abby's Aunt Suzy, thank you so much for making Margaret the neuroblastoma bracelet. She loves it and it is a constant reminder that people everywhere, even folks she doesn't know, are thinking about Lyrissa.
Monday, August 8, 2005 3:52 PM CDT
Hi everyone
Things are about the same with Lyrissa today. We are cautiously optimistic about the new drug the doctors are using against the VOD. Her bilirubin levels have dropped just slightly, but her abdomen is still huge and full of fluid. The drug doesn't work instantly--it's a two week course of therapy--but it is vital that is DOES work as this drug is her only chance at this point.
My sister has about reached her breaking point. She is so frustrated and angry at having to see Lyrissa go through all this pain. Complication after complication has taken it's toll on her positive outlook and right need she needs all of her friends and family to reach out and support her. Thank you to all those who have sent packages and cards and made phone calls. Thank you to the Buffalo, NY folks who sent her that great care package! Margi and Greg opened it today and it was wonderful.
Right now the Brays need specific prayers that this drug will work and will reverse the VOD. Lyrissa cannot tolerate any more organ failure. It's hard to imagine any neuroblastoma cells still alive after the lethal doses of chemo Lyrissa has had. The chemo managed to destory her blood vessels themselves so hopefully it took care of the cancer as well. We knew this would be the most difficult part of the treatment but it does not make it any easier.
Thanks again to everyone.
Claire
Saturday, August 6, 2005 12:17 AM CDT
Lyrissa has been started on the medicine to reverse her liver problem, which by the way is called "Veno-Occlusive Disease."
Please pray that Lyrissa responds to the medication (not all children do) and that her body begins to recover and heal. It will take several days to know whether or not it is working.
Lyrissa has been through so much, and in the last few days, seems to be kind of sad. I hope her spirits improve soon.
Margi
Thursday, August 4, 2005 5:59 PM CDT
It seems like we take one step forward and two steps back. THe good news is Lyrissa is off the ventilator! Last night around 10 p.m. they removed it and she is breathing well, with the help of a little nasal canula.
Our excitement was short-lived, however, when today they noticed her stomach was a little more firm, and ordered an ultrasound. Her liver enzymes were elevated and the ultrasound confirmed what is known as V.O.D. They also call it "reversal of flow" when certain arteries in the liver can't filter blood flow. It is a side effect of the high dose chemo she received. Sometimes it resolves on its own, but usually it must be treated with a blood-thinning agent. But that becomes a problem in children who frequently need platelets - severe bleeding can occur.
BUT...here is the amazing thing. There is a new drug called Defibritide (sp?) which is not yet approved by the FDA, for what her doctor tells us are bureaucratic reasons. They got it approved for Lyrissa and it is being flown in from Boston for her tonight. Can you believe it? Apparently they use it a lot with very good results and very minimal chance of causing bleeding like all of the other drugs.
Please continue to keep "Roo" in your thoughts and prayers, and yes, I must ask for very special prayers for Greg and myself as we feel as though we have been on a never-ending terrible roller coaster ride. But we feel very grateful to God for all of the wonderful doctors and nurses here, who are literally working night and day for Lyrissa.
Tuesday, August 2, 2005 8:01 PM CDT
Lyrissa is still stable, and they are slowly weaning her off of some of her meds. She is off antibiotics and her yeast infection medication now. They are slowly tapering down on the drugs used to raise her blood pressure. They are evaluating how well she tolerates that in combination with fluid removal.
The fluid removal is a slow process, but most importantly they want her to be able to breathe effectively on her own. They have tapered down the ventilator to see how well she does, and she IS requiring less support in that area. Tomorrow is another day, and they will re-evaluate her progress again.
Monday, August 1, 2005 5:11 PM CDT
Thanks to everyone for all of the cards, stickers, prayers, support, and love for us and our little "Roo."
Lyrissa is currently still stable. Her counts are over 2,000 and she is fever-free. She is still on the ventilator and the hema-filtering machine.
Her blood pressure has been dipping too low at times, and they have had to use what they call "pressers" to raise it. Some of that is attributed to the sedation meds, but apparently they can't remove a good amount of fluid until her blood pressure is stable. Yesterday her whole body was very cold and her temperature was actually too LOW, so they used what is called a "Bair Hugger" (a warming blanket) to warm our little Roo up.
I really cannot describe the feelings of the last few days other than to say terrifying and heartbreaking and something you would never want to go through. Lyrissa's doctor says Lyrissa is taking baby steps now, but still has a long challenge ahead. The fact that she is not worsening is also a good sign, and as I said before, we take every one we can get!
Thanks for continuing to pray for us and keep us in mind.
Saturday, July 30, 2005 6:07 PM CDT
Day 10
Thanks for all the prayers and support for us and Lyrissa. Lyrissa is currently in the PICU (Pediatric ICU) and she is on a ventilator. Lyrissa's body retained a lot of fluid and her breathing began to suffer. At the present time, Lyrissa is stable and they are using a special machine, very similar to kidney dialysis, to remove the excess fluid from her body. It's called hema-filtering.
The doctors believe that Lyrissa has what is known as "leaky capillary syndrome," which is sometimes seen as a result of such high doses of chemo. Her capillaries/blood vessels were so damaged that fluid began to leak out into her body. Once her cells began to return to help fight the damage, inflammation occurred. Lyrissa has other issues which complicate things, such as one kidney, her central line yeast infection, and the lack of a good "access line" to administer meds and draw labs. They placed an intra-jugular catheter in her neck, and a femural line in her leg for the hema-filtering.
Right now, we have to just pray and hope that things get better for Lyrissa. Thank you for keeping us in your prayers and thoughts. Margi
Friday, July 29, 2005 7:07 AM CDT
Day +9
Lyrissa is now on a ventilator to help her breath. The fluid just isn't coming off like the doctors hoped. She may have a procedure later today kind of like dialysis to help remove the fluid. Margi said Lyrissa is sedated while on the ventilator so at the moment she is resting well.
Thursday, July 28, 2005 3:20 PM CDT
Day 8
Lyrissa has been moved to the PICU (pediatric intensive care unit) because her oxygen saturation levels kept dropping. Both the mucositis and her fluid retention have made it difficult for her to breath so they have her on bi-pap, a small mask that fits on her face and each time she takes a breath it forces some extra air into her lungs by positive pressure.
She is having an ultrasound of her heart and stomach and she has had an EKG. She also got an arterial line placed today so they can draw blood to measure blood gases. The doctors are still searching for the source of the infection that is causing her fevers.
The new phone number is 267-426-4724. For now Margi said to keep the address for mailing the same, but if you are visiting, Margi and Lyrissa can be found on 7 south, room 24. We are not sure how long she will stay in the PICU.
Claire
Wednesday, July 27, 2005 8:40 PM CDT
Day +7
Lyrissa is about the same today. Her breathing is still a problem as her body is trying to deal with all of the excess fluid retention. We have to re-position her frequently to maximize her air flow.
She got platelets twice today, and with her later batch, she got a different kind of diuretic because the Lasix hadn't done much for her earlier. It is hard to watch her struggle to breathe...and how exhausting it must be for her! :(
Her fevers have not yet subsided, but she did have a whole five cells today! We hope for some improvement real soon.
Tuesday, July 26, 2005 5:36 PM CDT
Day +6
Today Lyrissa's challenges involve fluid retention and breathing. Apparently chemo can destroy vessels in the body and fluid can then leak out. As the body tries to process/absorb it, it has to work harder which makes the heart rate increase, etc. A chest x-ray showed some fluid on her lungs which they expected. Her oxygen saturations had been down to 85 percent.
Her wounds on her body from tape, needles sticks, itching, etc., are still bleeding, so in addition to another platelet transfusion today, she got a side order of what they call FFP - fresh frozen plasma to help with the bleeding. After her blood products, she got some Lasix which is a diuretic, in hopes that the fluid will start to decrease. The chemo has also caused a purplish rash all over her body which contributes to her itching.
While the doctors said they are concerned, they are not in a panic at this point. They seem to be convinced that once her counts return, a lot of this will resolve. Actually it is common for it to get worse before it gets better, as the cells attempt to recover.
Lyrissa spent the enire day pretty much out of it, which I guess is better than substantial agitation, itching, or pain. Her struggle today was mainly just trying to get adequate/sufficient air into her lungs.
Daddy drew a huge Barney for Lyrissa on her window, (it looks like a professional did it!) so at least she has something to cheer her up while she is too sick to color or play.
Monday, July 25, 2005 3:46 PM CDT
Day 5
Wow. Can things please get better soon?! What a weekend my poor sweet little one had. First her central line has yeast and has to be pulled, then the Ableset (anti-fungal she has had before) gave her the "rigors" which is severe shaking, and very scary to watch!
Lyrissa has been in significant misery; they can't figure out why she is agitaed and itching, and/or if it is related to the narcotic or not. Her skin is so broken down and bleeding - she is receiving platelets almost daily to compensate. On top of all this she has two peripheral IVs - one in each foot. At least she did, until last night when one went out. Ouch! Even with those lines, she still must be "stuck" for blood draws and cultures. Today, she had to have another IV put in to replace the one she lost. This one is in her poor little hand.
I haven't updated much because things are changing so fast. I have not been able to talk or return calls because Lyrissa is requiring constant care/attention right now. (And don't forget little Nicholas is here too, and he occasionally likes a bottle and once in a while a diaper change!:) Nicholas is a bright ray of light who can sort of "re-charge your battery" when you're down or discouraged about Lyrissa. His opinion and attitude is that the whole thing is one big riot, and in the midst of all this chaos, he can be seen with a big grin, showing off his two new little bottom front teeth!
Two pieces of good news...her kidney function continues to slowly improve, and she received several HUGE bags full of brand-new gift-wrapped toys from the Anjanette Robbins Foundation today. We can't wait until she feels better to share them with her.
Please pray that Lyrissa gradually improves as her counts come back and that they are able to successfully treat the yeast with a new meication called Varconazole (sp?). Most of all that her daily suffering during blood draws be minimized. She is scheduled to have a PIC line put in her arm on Wednesday. A new central line will be somewhere down the road, maybe even after discharge.
Thanks so much for all your thoughts/prayers, and we will return calls and messages just as soon as Lyrissa starts to improve. Margi
Saturday, July 23, 2005 10:56 AM CDT
Day +3
Hi everyone. It's Claire writing this time. I've got good news and bad news. First, Lyrissa's kidney function seems to be getting better. Her lab values have come down slighty. Unfortunately, her central line has a yeast infection. They will be removing it in the OR at some point today. This will be her third central line!!! She is getting anti-fungal medication now, but with her central line gone it means she will have to be stuck every time fluids, meds, labs etc are needed and it is very hard to find her veins.
I am making a plea for cards for Lyrissa. There is a big bulletin board in her room that is currently empty and is waiting for all of us to send her cards!! She loves stickers and she IS allowed to have them as long as they are packaged. So if we could all send her a card with some stickers enclosed I think it would make her (and my sister) feel better. The address is at the bottom of this page.
Margaret did say Lyrissa seeemed a bit more comfortable today. She still has a fever but it is being managed by Tylenol and she was awake and coloring when I spoke to Margaret this morning.
Thanks everyone!
Friday, July 22, 2005 5:36 PM CDT
Day 2
Things are about the same for Lyrissa; her kidney function is holding steady but still too high, her vomiting is manageable, her mucositis is still pretty bad, and unfortunately her fevers are coming and going. They are doing blood cultures every 24 hours, and adjusting her antibiotics based on her kidney levels.
Nothing can be resolved until she gets her (ANC) absolute neutraphil count up. Right now they say that this is nothing but a waiting game...waiting, hoping, and praying that Lyrissa doesn't get any worse than she is, and that day 5, 6, 7, 8, 9, 10..etc., get here soon!
It truly is one HOUR at a time, as another mom who went through this wrote in the guestbook!
Thursday, July 21, 2005 8:13 PM CDT
Day +1
Lyrissa's pain and itching are finally somewhat under control. Her vomiting continues off and on, but that is to be expected. Her kidney levels (creatinine and BUN) are still not very good. They stabilized a little today, but are still in the high range. Later in the day, they again went up a bit. They're holding back some of her meds that are particularly hard on the kidneys, and last night held off on her intravenous feeding. Tonight, I guess they felt comfortable enough to try it again. (She really needs adequate nutrition at this time, especially protein). They are drawing her labs frequently to check her levels. This kidney issue is the scariest thing right now.
Most of the day Lyrissa sleeps which is better than her being in pain. She still has painful mouth care to endure, as well as daily baths, shots, and medications.
Thanks for all the wonderful posts - they are a great source of strength for us at this VERY hard time.
Wednesday, July 20, 2005 6:15 PM CDT
Day Zero - Transplant Day
Lyrissa has really been having a tough time with this process. She had a very restless night, filled with pain, itching, and congestion. Her entire morning was spent with bad itching, which they were treating with Nubane and Attarax (sp?). Finally, they decided to switch her pain medicine from Dilaudid to Phentynol (sp?) to reduce the itching. Meanwhile, she had fallen behind in her comfort level due to pain. She is also vomiting, and twice it was a large amount of blood. So at two separate times today, Lyrissa received platelet transfusions.
They are also watching her kidney levels very closely, as they were going up and this is something that can lead to trouble, especially since she just has one. They are now drawing labs every six hours. At 2:00 p.m. her kidney levels had not gone down, but they had not increased either.
Lyrissa received two "batches" of her cells, which contained two large vials each. It was an uneventful process, as expected, but it causes vomiting and of course, Lyrissa was no exception. We now wait for a process called engrafting, which just means when her body "takes" the new cells and her ANC (absolute neutraphil count) begins to increase. This doesn't happen for at least another week, however.
Lyrissa had just managed to attain some level of comfort at the end of the day, when it was time for her (very painful) central line dressing change, and nightly GCSF shot in her leg. Her skin is so VERY tender, as if she has received a horrible sunburn. Her skin was bleeding on her chest during the dressing change. No child, no human being should have to go through this. If I ever win the lottery, it's all going to cancer research!
So, as you can see, right now there is not a lot of good experiences to report. Please pray that Lyrissa's kidney remains in good shape.
Tuesday, July 19, 2005 8:16 PM CDT
Day - 1
Lyrissa had a rough night and it continued into today. Her breathing is very loud, and they contribute it to inflammaion of her trachea, throat, etc. She is now on a continuous narcotic pain medication, and she also has a small pump which we can operate to give her quick doses of pain meds when she needs it. To add to her misery, the pain medication made her very itchy, so now that is being managed with a drug (primarily used for pain) called Nubane.
Even though her breathing is very loud (very scary!) her oxygen saturations are around 100 percent. While they are concerned about it, it is not completely unheard of with children her age because they have such small airways. Our prayer now is that Lyrissa's breathing not become obstructed as a result of the mucositis. Her mouth is very red and irritated, too. Additionally, her labs showed that her bicarbonate (sp?) and potassium were low, so they have adjusted her intravenous feeding, which I forgot to mention, was started yesterday.
Most of Lyrissa's day was spent asleep and/or in pain/discomfort/itching/agitation. Brighter days just have to be ahead for this little one!
Tomorrow Lyrissa gets her cells back, probably in the early afternoon. We are told to expect a very strange smell during the process, one which has been compared to creamed corn or tomatoes, among other things. That is due to the preservative that the cells have been stored in. Will post tomorrow on how the long-awaited "transplant" goes.
Monday, July 18, 2005 6:49 PM CDT
Day -2
Lyrissa's ANC (absolute neutraphil count) is now only 400, and her platelets are dropping too. They are re-adjusting her antibiotics because of her creatine (kidney) levels. They must watch them closely because of her having only one kidney. So far, the cultures have not grown anything but her fever is still coming and going. Her vomiting is about the same. She is already starting to show irritation/breakdown in her diaper area and they think that her mouth, G.I. tract or throat might be starting to show the effects of the mucositis (mouth sores) as well.
Poor Lyrissa has to suffer so much, and even though we knew this would be expected it does not make it any easier to watch. It is very hard to see our little angel go through all this. Sadly, pain and suffering are now no stranger to Lyrissa, yet she still manages to talk a little and do some arts and crafts with me.
These super-strong chemo doses have left Lyrissa a pink color! Her face and upper body area seemed to be tinged pink and her eyes appear bloodshot. Some here say they have seen this before and it will gradually go away. We must keep in the forefront of our minds that this treatment is giving Lyrissa the best possible chance for NO RELAPSE! I believe God is helping Lyrissa get through this. We are told it will get worse before it gets better.
Thanks for all prayers and support, and special thanks to our wonderful friends the Turner's and the Durkin's for helping us out with little Nicholas, who has turned out to be the best medicine of all for "Roo!" We are grateful to our friends for their constant unconditional support.
Sunday, July 17, 2005 10:15 PM CDT
Day -3
Today was Lyrissa's last day of chemo! As good as this sounds, this is actually often called the "honeymoon period," because it is BEFORE the tough mouth sores/skin breakdown and severe pain begin.
Lyrissa had an okay weekend, but is really not feeling too great. Her vomiting has continued but is being managed with medication. She has also developed a fever, which is considered "low-grade," but they are doing blood cultures, labs, etc., to check for any growth. They also started her on some IV antibiotics which she has had (every time!) before. This is of course in addition to the antibiotics she takes daily by mouth to PREVENT infection. Taking all these meds also contributes to her tummy troubles. Poor Roo!
Today she reveived red blood cells, and even though she was feeling lousy, she enjoyed reading some books and coloring in her bed. We also used special window markers to color her windows to help cheer her up! Thanks for prayers and support.
Friday, July 15, 2005 9:34 PM CDT
Day -5
Hello from a NEW room here at CHOP. Lyrissa is now in Room 11; I posted the new phone number on the main page. We had to switch rooms because Lyrissa's previous room only had a shower stall in the bathroom, and she needs a tub to bathe. As part of the treatment, Lyrissa must be bathed every day, her linens must be changed on her bed, etc. There are many precautions that are taken here to avoid any source of infection. For example, once any food item is opened, it must be thrown away after four hours. No one can eat in the room except Lyrissa; parents can drink only. There are special restrictions on her diet - no fresh fruits or vegetables because the skins can transmit bacteria, no deli meats because they come in contact with too many people. All patients on this unit receive the first foods from the kitchen each day. There are even rules regarding toys. For example, if Lyrissa had a favorite doll here, its hair would have to be washed daily!
Unfortunatley, Lyrissa cannot receive flowers, balloons, or stuffed animals. Thank you to all who offered. She can, however, get cards through the mail, which always cheer up Lyrissa. We are appreciative of everyone's support for Lyrissa.
Well, the chemo drugs have started to kick in, as we noticed earlier today that Lyrissa was not herself. Her vomiting increased today in the afternoon, but they are very good here about medicating her quickly. Although she receives Zofran for nausea around the clock, sometimes it is not strong enough. They then use a combination of Phenergan and Benadryl, known as "Phen-Ben." We've used this before with good results. Hopefully it will help keep her vomiting to a minimum.
Thursday, July 14, 2005 7:27 PM CDT
Day -6
Hello from the Ronald McDonald House, which I forgot to mention on my previous post, is the very first Ronald McDonald House ever!
Just a quick update - Lyrissa is still feeling pretty good and seems to be in great spirits. We are very impressed by the staff and the facilities at CHOP.
Just to let everyone know - I posted all of Lyrissa's room information on the main page - the address, her room number, and our phone number there. Also, please feel free to call us at the Ronald McDonald House as well at 215-387-8406. Our extension is 106. We have voice mail at the Ronald McDonald House also.
Thanks for all of your support.
Wednesday, July 13, 2005 9:08 PM CDT
Day -7 Here at CHOP!
That is how Lyrissa's transplant dates are calculated. On day zero (July 20) is when she receives her stem cells back, and the days thereafter are 1, 2, 3, etc., post-transplant days.
Today Lyrissa's chemo infusion began about 11:00 a.m. She is receiving a total of three drugs at the present time; Melphalan, Carboplatin, and Etopophos, with the latter two running for a continuous 24 hours. All of her chemo should be completed by Sunday. Lyrissa also receives several drugs by mouth for antiobiotic purposes, and her mouth care has begun as well. The goal is to prepare ahead for anticipated mouth sores.
Poor Lyrissa - she had some vomiting already today! Thankfully it was nothing major, and she is receiving her Zofran for nausea around the clock. They try to minimize her feeling sick as much as possible. She is still eating very well, but we are told that every child winds up on TPN (intravenous feeding) at some point while here. Luckily, the transplant doctor here was in agreement with us regarding NOT going home on TPN unless absolutely necessary.
Well, apparently Lyrissa has not isolated ALL of her friends at Sesame Street; today she was visited by Grover and Zoey! Yes, the real characters came for a visit to this unit and did a special dance for Lyrissa in her room! They also brought a few special little surprises! It made Lyrissa very happy!
We know that this fairly uneventful period of time is the "calm before the storm," so for right now we're just trying to fill Lyrissa's days with play and fun. More tomorrow.
Tuesday, July 12, 2005 8:31 PM CDT
Hello from CHOP! Well, we made it up here, but unfortunately, did not have a very good first day. Although we were here by 10 for labs and check in, Lyrissa's room was not available until late in the day, due to a bed shortage. Also, the Ronald McDonald House (here in Philly) is completely full, but thankfully they squeezed us in. They said they had a small room with the bathroom in the hall shared by other families. That was absolutely fine with us, so we left the hospital frustrated about 2:30 and came over to the Ronald McDonald House. This Ronald McDonald House is an old restored building which is beautiful inside. Finally, Lyrissa was admitted about 5 pm. I am sure everything will be okay, as everyone seems very dedicated and the Bone Marrow Transplant Unit is very nice.
As for the important info - Lyrissa will receive hydration overnight and her chemo will begin sometime later in the day tomorrow. It should run for about five days, with her stem cell to be infused on July 20.
More tomorrow, and thanks for your support!
Monday, July 11, 2005 10:34 PM CDT
Tomorrow (Tuesday, 7/12) we are headed up to CHOP for our 10:00 a.m. scheduled admission. We hope and pray for the best for our little "Roo," as it is so difficult to now go and make her sick again.
She has had a wonderful two weeks off - the longest and most healthiest time she has had at home since her diagnosis. Every day is a joy when we're home and Lyrissa is healthy! We ask for special prayers for her stem-cell transplant.
Will update more from CHOP as we settle in there and learn how things work in our new environment. Thank you for all your postings, prayers, and concern. Margi
Wednesday, July 6, 2005 9:20 PM CDT
Lyrissa had her bilateral bone marrow aspirations performed and she recovered from the procedure well. She just has some slight discomfort in her lower back but I already removed the bandages and she seems to be fine now. The results of those biopsies will not be back for sveral days. Although it would be very unlikely for any disease to be present in her marrow since it has always been clean, the doctor informed me that it is not completely unheard of. SO unitl we know for sure, we pray and hope for the best.
Lyrissa's admission to CHOP is pushed back a day; it's now scheduled for Tuesday, July 12. We are told to expect that the worst of her reactions (mainly severe mouth sores/mucositis) should be about a week to ten days into our stay. I think the day that she actually gets her stem cells back (the "transplant" or "rescue") is the 20th. Apparently it is a surprisingly uneventful procedure - merely a "push" through her central line of a couple of vials of her blood. It sounds like such a big process, but of course the hardest part is the reaction to and illness from the preceding high doses of chemotherapy.
The nurse practioner has reviewed some of the guidelines with us regarding Lyrissa's treatment and what is allowed and not allowed because of her supressed immune system. For example, there are rules regarding anything we bring into her room, a protocol for visitors (but she CAN have healthy ones!), guidelines for food and drink, etc. One of the biggest risks of this treatment is infection, so it is vital that Lyrissa be protected from any source of bacteria.
Well, Elmo and Big Bird have experienced rejection, I am sorry to say. Lyrissa wanted no parts of meeting either of them; however, she has not stopped talking about them both since we left the park. Go figure. I like to think that's just a typical two-year-old!
Lyriss did not stay up late enough for fireworks on the fourth, but during a quick walk that evening, she unexpectedly got to see a beautiful pink/orange/red sunset. Her face lit up as she watched it sink slowly down and she said "Night, night, sun!" :)
Friday, July 1, 2005 2:38 PM CDT
Lyrissa had a very good week; her spirits are the best we've seen in a long time, and she is really enjoying herself these days. What that means to me, of course, is pure happiness since it's been too long since I have seen her happy for any extended period of time.
Lyrissa had her bone scan with sedation yesterday, which again, I am pleased to say was clear. She also had labs and met with her doctor. Earlier this week, we met with the radiation doctor at Christiana Hospital, who explained how the radiation will work. Lyrissa will have 15 treatments, once each day in the morning for 15 days. Because of her age, she will be sedated, and the radiation will be just to the site where the tumor was. They will place three permanent dots on Lyrissa (like a tattoo), so that they are sure to line the machine up right and protect all the other vital organs. She may experience some minor side effects, such as nausea and tiredness. Other than that, it did not sound too bad.
Next week Lyrissa will have a procedure here at A.I. called bilateral bone marrow aspirations, where they sedate her and draw marrow from each hip. She has had this done before, and her bone marrow has never before shown evidence of metastases. We hope and pray this again is the case. After that, she is pretty much done with her pre-transplant testsing and scans. (We may have one more in-depth hearing test to do). They also will do some cognitive social/psychological testing (primarily play) once we're up at CHOP.
The very good news here is that there is a very famous red monster and a gigantic yellow bird waiting to meet Lyrissa!! Yes, that's right - Elmo and Big Bird eagerly await Lyrissa's arrival in their neighborhood next week! The folks at Sesame Place have arranged free tickets for our whole family, and a PRIVATE "meet and greet" session for Lyrissa and her favorite friends! We are so very thankful for this special treat, and can't wait to share this excitement with our little "Roo!"
Tuesday, June 28, 2005 8:51 PM CDT
We had our family meeting at CHOP today to discuss Lyrissa's upcoming transplant, tentatively scheduled to begin on 7/11. We were very pleased with our meeting, despite having to hear all of the "worst case scenarios." We expected that; they must tell you everything. Nevertheless, the doctor is very happy about Lyrissa's response to treatment, the tumor resection, and her lack of any disease at this point.
She is now technically considered in remission or "N.E.D.," which means No Evidence of Disease. So it is hard to contemplate putting her back in the hospital once again, and making her sick. As the doctor explained to us, before they began doing these stem-cell transplants, someone with Lyrissa's history and response, although it is good, would still have about an 80 percent chance of relapse! Once relapsed with neuroblastoma, there are really no proven treatment options for cure. So, in other words, this is our best chance. We have to believe that, and focus on the fact that they have come far with neuroblastoma research and treatment, and we are lucky to be so close to one of the best hospitals in the country. So we're ready to move forward with this next step of treatment, and ask for prayers that Lyrissa continues to do well. Thank you.
We are told to expect about a four week stay, barring any complications. The middle two weeks are expected to be the worst - primarily severe mouth sores. We experienced that in January; we hope it is not too much worse than that.
Tomorrow is a meeting with the radiation doctor at Christiana Hospital in Newark, Delaware. Apparently radiation machines are very expensive, and there are only two children's hospitals in the country that have them. Adult hospitals use them much more, so that's why she will be going there for her radiation. This will begin after she returns home from her transplant.
Lyrissa will be immuno-compromised for at least six months following transplant, which means no playing with children, no malls, play groups, stores, etc. This is pretty much how she has been living since January anyway. But, watch out next week!!! We are going to make sure our little "Roo" enjoys a short period of summer. That will include (among other things) a trip to Sesame Place and possibly dining with Big Bird or Elmo! Seeing Lyrissa happy is our greatest joy.
You may remember me asking for your prayers a while back for another friend with neuroblastoma - two and a half year-old Grace. Well, I am happy to say that Grace, who also went from A.I. to CHOP like us, is home and is doing very well!
Saturday, June 25, 2005 1:02 AM CDT
We're home - hooray! The pathology from Lyrissa's sore did not show anything and we will now give her an oral antibioic at home. Additional good news is that the MIBG was negative for disease! Lyrissa also had a repeated hearing test, during which I am proud to say, they had to use the method of assessment that they generally use on kids over three!! Lyrissa wore little mini earphones while the evaluator told her to hand me different colored objects. My "Roo" has known all of her colors since about 18 months, and she followed the instructions, and made me so proud! Her hearing appears to be good - she can hear voices/speech on a whisper level. They believe they will now have to do another, more in-depth test to determine pitch/tone, etc., because that portion was inconclusive.
Lyrissa also got more platelets today.
Next week Lyrissa has a bone scan, labs, our meeting at CHOP, and also an appointment with the radiation doctor at Christiana Hospital. Radiation begins after we return home from the stem-cell transplant.
Thursday, June 23, 2005 9:12 PM CDT
Lyrissa had her minor procedure (so minor that I stood there the whole time and watched), her MIBG scan and her CAT scan of chest, abdomen, pelvis, head, and sinuses. No pathology yet on the sore, and no results on MIBG. But the CAT scan was clean! Once again, we take every win we can get!
Lyrissa now gets a drug called Propophol (sp?) for sedation which works a little better and she wakes up less irritable with that medication.
Yesterday Lyrissa got red blood AND a side order of platelets. :)Today her ANC is 920.
They are hopeful that once the exact type of sore is known, they will be able to send us home on oral antibiotics, possibly as early as tomorrow. Lyrissa may get to see the swings soon! I can't wait to see her happy again! More tomorrow..
Wednesday, June 22, 2005 11:13 PM CDT
Today Lyrissa's ANC is 280 and she was feeling better. The sore looks improved, and the plan is to do this minor surgical procedure tomorrow to biopsy it. At 8:00 a.m. Lyrissa is scheduled for her MIBG scan and the surgeon told me he will try to come over then and do the procedure while she is under the same sedation. That would be wonderful because that would mean that she won't have hours of fasting all day. And the good news is, the same terrific surgeon who did her tumor resection is doing tomorrow's as well. Hopefully they'll get the pathology back by Friday and then getting out of here won't be far off.
We are relieved to now have the family meeting scheduled up at CHOP to discuss Lyrissa's upcoming transplant. We will be meeting with the doctors and staff next Tuesday. At that time, we will probably be given a date for her transplant process to begin. It will most likely be very shortly thereafter.
Thank you for the thoughts and prayers for Lyrissa to feel better this week. Margi
Tuesday, June 21, 2005 9:46 PM CDT
Lyrissa is still not feeling well. Today she had 80 neutraphils. (She needs 500 to leave). I guess that's better than yesterday; she had four. They now want to ultrasound her leg everyday until the sore gets to a point (with the help of her steadily increasing white count) where it can be "drained" and then biopsied to determine what type of infection it is. Each day until surgery comes in to examine it, (which thankfully is pretty early) they want her to refrain from having anything by mouth, just in case that day is the day that the sore is where they want it to be for this minor surgery.
In addition, she also had her echocardiogram performed today, which is in anticipation for her upcoming transplant. We still have no information with regard to the dates, or even a projected date of her transplant. Hopefully more on that soon....
Monday, June 20, 2005 7:15 PM CDT
Lyrissa's sore on her leg has taken a turn for the worse. It is very, very painful and does not seem to be responding to the THREE antibiotics she is now receiving. Today an infectious disease doctor examined it, and she also had a (very painful) ultrasound of the site. Ouch! Poor "Roo."
Thankfully, there is not an abcess there. However, their plan now is to do a minor surgical procedure to biopsy it. The infectious disease doctor wants to make sure that it is not a specific staph infection, as well as to clear up whatever it is so that she does not go into the transplant phase with any lingering infections. Also, these antibiotics she is currently taking can be hard on the kidneys and, dependent on what infection it is, she may not need one or all of them.
She is still neutrapenic but has been fever-free since Sunday, and no growth on the cultures so far. She's getting pain meds now to help with her poor leg. Lyrissa got to do some arts and crafts with me today in her bed, while Nicholas watched and laughed at us! :)
Saturday, June 18, 2005 10:55 PM CDT
Today we got some good news and bad news. The good news is that Lyrissa's sore on her upper inner thigh is a minor skin infection that they are just going to keep an eye on for now. It appears to be responding to the antibiotic(s). The bad news is that upon looking at Lyrissa this morning, the surgeon immediately determined that Lyrissa has a hernia! Can you believe it?! This poor little soul can't get a break for anything! It is considered to be completely unrelated to her neuroblastoma and just a common condition of childhood. It will probably eventually need surgical intervention, but they will wait until her completion of and recovery from treatment. Today Lyrissa's fever came and went, but I am happy to say that for most of the day she did not seem to be in too much discomfort.
Well, tomorrow is Father's Day, and Lyrissa will celebrate by making daddy a card with her crayons and stickers. She is grateful to her dad for always being there for her. Greg is the one who, when it was just too much to see Lyrissa vomiting anymore that first month, stood faithfully by her bedside to comfort her. He is the one who, when I could not bear the thought of putting a needle in little Lyrissa's leg, remained strong and learned how to administer her nightly shot with love yet heartache for his little one. Greg is the one who carefully cuts Lyrissa's fragile, brittle nails with care and tenderness, dutifully makes Lyrissa her favorite Ramen noodles at any hour, and never complains when a Barney video takes precedence over ESPN! :)
Friday, June 17, 2005 7:22 PM CDT
Lyrissa is still not doing too well. Her fever has been coming and going and she vomited this afternoon. Poor Lyrissa - she also has a swollen area near her groin which they think may be a lymph node. Surgery is coming to look at her tonight in case it needs to be drained. She currently has no neutrphils so she can't fight off anything. Our hearts break for our little bunny to have so much discomfort, yet the really hard part is still ahead of us. :(
But to cheer up Lyrissa, Nicholas, and me, my good friend and coworker, Marty, came to visit and share good news about a benefit they are working on for little "Roo." Our family appreciates that.
No word yet on her blood cultures, but I'll post more tomorrow.
Thursday, June 16, 2005 8:26 PM CDT
Unfortunately Lyrissa is back here in A.I. with F&N (that's hospital slang for fever and neutrapenia). Anyway, she's had the usual blood cultures drawn and is getting antibiotics already. Tonight she had a strange bout of shaking/chills so they're keeping an eye on her blood pressure, heart rate, etc.
Lyrissa's GFR (kidney function test) she had done on Monday is normal. Evidently her lone kidney wasn't a bit fazed by the removal of its counterpart. :) As our friend Jada's mom says, "We'll take every win we can get!"
More tomorrow on the lab results..
Tuesday, June 14, 2005 10:53 PM CDT
Lyrissa went to A.I. today, but (without giving you all of the lovely details) it was not a good day and she did not have the bone scan done.
Lyrissa is neutrapenic right now, was very tired and hungry, and needed red blood. Suffice it to say that I have made the decision that I will no longer have Lyrissa scheduled for tests or scans that require fasting until the afternoon. She is two years old and has been through enough, and I can't put up with continually seeing her suffer.
Anyway, I'll spare you all the specifics of our wonderful day, but ask you to hope and pray for a better tomorrow! :)
Monday, June 13, 2005 5:43 PM CDT
Lyrissa had her six-hour GFR test today, but no results yet. In between each hourly blood draw I took her on the swing on the playgound and she loved it!
Tomorrow is a bone scan with sedation at 1:00, and labs at the hematology/oncology clinic at noon. Lyrissa will again be allowed nothing by mouth six hours prior to the scan.
Sunday, June 12, 2005 10:50 PM CDT
Lyrissa had a nice weekend at home and is still in good spirits. We believe part of the problem with Lyrissa's moods was the Decadron (sp?) they had been giving her to prevent nausea. It is a steroid she had received only the last couple of rounds of chemo. Each time it made her miserable and it stays in the system for a while, too. So this time, after the first day of Decadron and a similar reaction, I asked them to hold it unless she really needed it for vomiting. Her mood was improved within 24 hours and she has been good since.
Tomorrow we head up to A.I. for a six-hour GFR test which is a test to check her kidney function. A picture is taken of her kidney after some dye is injected and blood is drawn each hour for six hours. The last time she had this test we were inpatient so it was pretty much "painless." This time, however, it may be more challenging to try and find things to keep Lyrissa (and Nicholas!) busy at the hospital.
This test will see how well Lyrissa's one kidney is adjusting to going solo, so to speak. More tests/scans throughout the week, and I will post the updates.
Friday, June 10, 2005 2:36 PM CDT
We are leaving soon today! No word yet on the definite date of Lyrissa's transplant, but we do have a schedule for most of the tests, scans, labs, et., which will occur in the next few weeks. (We can get all of them done here at A.I.). Next week will be a particularly busy week, with Lyrissa being up here on an outpatient basis every day but Wednesday.
Today Lyrissa had two of her pre-transplant exams - her hearing test and her dental exam. The hearing test will have to be repeated because the results were inconclusive. These tests are being done to see how the last six rounds of chemo have affected her, as well as to get "baseline" information prior to transplant.
I also was able to talk to Lyrissa's primary oncologist, Dr. Griffin, who has been away, but is now back and pleased with Lyrissa's progress. She didn't seem to have significant nausea this time, but, as with EVERY prior round, Lyrissa always winds up back here with a fever about a week later. Oh well. Unfortunately, we now again begin the nightly GCSF shots in Lyrissa's leg. Ouch!
Tuesday, June 7, 2005 6:27 PM CDT
Sorry it's been so long since I've updated. Well, we are back in A.I. Dupont for Lyrissa's sixth round of chemo. Can you believe it? Unfortunately the Blood & Bone Marrow unit is closed this week for repairs, so we are on the wing we were on the first month (the ENTIRE month of January), where many of you visited us. Thankfully, though, Lyrissa has her own private room (at least for now), because they want to make sure she stays nice and healthy for her upcoming transplant. Yes, that's right, Lyrissa's transplant should be sometime next month!! June 5th marked five months since Lyrissa's diagnosis and treatment began. January 5, 2005 - the day that Greg's and my life changed forever. We slowly accepted Lyrissa's illness and have been copying her style of fighting back! What a tremendous time we have been through, watching our baby girl suffer so much. We have, however, received lots of blessings throughout this ordeal, the first one that comes to mind is a little guy named Nicholas!
Now, we must really dig down deep for strength, perserverence, and faith as we begin the most dangerous, difficult process - the stem cell transplant. I can post more at a later date on the specifics of this treatment, but in a nutshell, Lyrissa will be up at CHOP (Children's Hospital of Philadelphia). She will be given extremely high, lethal doses of chemotherapy - which I believe is called myleoblative, intended to wipe out any microscopic cancer cells in her body. Unfortunately, this chemo is so strong that it also wipes out everything else, and thus, her stem cells (which were collected and frozen in early April) will put back into her body to "rescue" her. The stem cells then travel around the body, and somehow they know what they want to develop into. One may decide to be a white cell, another may be a red cell, etc. (Not the most medically scientific description, but that is about my understanding of it, until we meet with the transplant doctor, Dr. Grupp, up in Philly).
Yesterday Lyrissa had some very special visitors - her former teachers and director of her daycare! They have NOT forgotten Lyrissa, not ever given up on her. Very special thanks to Miss Linda, Miss Terry, Miss Andrea, Miss Wilma, and Miss Karen for always keeping Lyrissa in their thoughts and minds. For remembering Lyrissa's time in their care, teaching her so much, and for continuing to love her. Greg and I will forever remember Miss Terry comforting Lyrissa as she was feeling ill, just a day before we heard the terrifying words that Lyrissa had cancer. We have a special place in our hearts for Miss Terry, as that was the last time (the evening of January 4th) that Lyrissa was in day care; our last true memory of "normal."
More tomorrow, and thanks for continued support.
Friday, June 3, 2005 8:07 AM CDT
Hello again! My sister will be furious when she sees I've posted this out here for everyone to see but........HAPPY BIRTHDAY, MARGARET!!!! We all wish you a very happy day with Lyrissa, Nicholas, Gee, and Greg! If I were there I would bake you a yummy chocolate cake (or buy one at Bings!) Have a great day!
Thursday, June 2, 2005 3:31 PM CDT
Hi everyone! It's Claire writing this time. Margi and Greg are home now but have not hooked up their computer yet. Lyrissa is recovering just fine from her surgery, and yesterday Margi took her to the park to swing (Lyrissa's favorite thing to do!). Her next round of chemo begins on Monday, June 6th. They have no idea when the stem cell transplant will take place. Lyrissa will undergo a bunch of tests and scans before it begins, but it will be sometime this summer. Meanwhile, they are LOVING their new house and slowly unpacking whenever the kids are asleep!
Saturday, May 28, 2005 5:50 PM CDT
We should be able to leave tomorrow! Lyrissa is doing well; she is eating and drinking on her own, and although she had a slight fever last night, it is gone today. (They were not concerned about it because it is apparently very common after surgery.)
She has been up and walking a little bit and got to play in the play room last night, take a wagon ride today, and soak up some rays on the outside deck this afternoon.
We are going to ask oncology if we can start her next round of chemo on Monday, June 6th, rather than Thursday, June 2nd, because Lyrissa really needs a break at home. Lyrissa's spirits improve when she is given some "down time" at home, and a few days delay will hopefully not matter much in terms of keeping her chemo schedule on track. We'll try to convince her doctors of that, too! :)
Thank you all for praying for Lyrissa's surgery and for her continued recovery.
P.S. A very Happy Birthday to Lyrissa's older brother "Gee," (14!) and to my mom, - two of Lyrissa's favorite people, and great sources of help and strength for me!
Thursday, May 26, 2005 7:13 PM CDT
Lyrissa continues to improve. The naso-gastric tube was removed today, and later tonight they are removing the epidural. The epidural actually sort of came out on its own earlier, and now they are just waiting for the right people to come and technically remove it. Poor Lyrissa, we couldn't figure out why some of her vital signs were showing evidence of pain, (blood pressure slightly elevated, heart rate and respirations up), and she was acting uncomfortable. Her nurse quickly gave her some Nubane for pain, and now she will be getting the pain med Dilaudid (sp?) through her central line. Hopefully she will be allowed to eat and drink soon.
The oncologist's P.A. (physician's assistant) who takes care of Lyrissa and coordinates all her chemo treatments, says that we may be out of here by Sunday, and that she would like to start Lyrissa's sixth round of chemo - believe it or not - on Thursday, June 2nd. I had no idea it would be that soon, as they had told us that the chemo would slow down the healing process. But the P.A., Marie, (another angel here!) assures us that this is appropriate, and how they typically schedule it with this protocol and other children have done fine with it.
After getting beyond the small pain glitch earlier this evening, Lyrissa enjoyed some coloring and reading in her crib.
Wednesday, May 25, 2005 6:20 PM CDT
Lyrissa is still doing well! She came up from the PICU back to 3A (the Blood & Bone Marrow Unit) and the wonderful nurses and staff that we have come to consider like family.
The oncologists are happy with the surgery and additional pathology reports will be back in the next day or so. We should know more about the tumor, its aggressiveness, etc., once the pathology comes back. The hope is that they see very few cancer cells and that most of its makeup is dead tissue. This could be likely because last week's MIBG scan ( a scan in which dye is injected and reacts to and highlights neuroblastoma in the body) did not react for neuroblastoma. (Confusing, I know.)
Lyrissa still has several of the tubes in her and her pain control maintenance is a small epidural in her back. She slept for most of the day. However, she requested mommy read several books to her and what a joy that was to see her respond to her favorite stories!! Also, she enjoyed looking at the balloons tied all around her crib, in the shapes of huge, colorful fruits and vegetables with big smiles. She managed to whisper, "Oooh..mommy, balloons!" Another joyous moment for us.
Thanks again for all your prayers and words of encouragement and comfort.
Tuesday, May 24, 2005 9:15 PM CDT
Lyrissa's surgery was successful!
It was a long, four-hour procedure but the terrific doctors, Dr. Reichert and Dr. Wolfson, were able to get all of the tumor, and the kidney was removed as well. They say that 95 percent or better was taken out, because there is always residual scar tissue which may contain cancer cells. That is the reason she will be having another round of chemo and the eventual stem-cell rescue.
During the surgery, they sent some of the scar tissue to the lab, and it was negative for cancer cells. Even if there are any remaining cancerous cells, they will hopefully be taken care of with the high dose chemo prior to the stem-cell transplant, then later the radiation of the site, and the acutane she will take by mouth.
Anyway, Lyrissa has a small epidural in her back right now for pain control, a naso-gastric tube in her nose to keep her stomach in good shape, and a Foley catheter for her bladder. All those should be out in a day or two, and Lyrissa has been comfortably resting in the PICU (Pediatric ICU), where she will remain tonight and maybe tomorrow.
Unfortunately, they told us that baby Nicholas should not be hanging out with us in the PICU because his immune system is too immature to handle any germs that may be there. So Greg and I took turns sitting with Lyrissa and Nicholas. That's okay though - this cancer can do a lot of things, but it can't separate our family!!! :)
Lyrissa's godmother and my wonderful best friend Kathleen came tonight to see us and play with Nicholas and give Lyrissa special kisses and snuggles that only a godmother can give!
Thanks for everyone's prayers, thoughts today and words of kindness and support. We hope and pray for a speedy recovery for "Roo!"
Monday, May 23, 2005 5:17 PM CDT
We came back to A.I. today for what was originally going to just be a pre-op check-up and labs, but because Lyrissa needed platelets and red blood, we got admitted and will just stay since her surgery is tomorrow at 10:45 a.m.
Lyrissa's doctors (the oncologists and the surgeons) have consulted about her surgery tomorrow and have given me information about their plans and goal. The tumor has responded very well to treatment, and it has now been compared to somewhere in the range of a golfball or an egg. (One doctor said a walnut, but I am not sure if it is quite that small.)
Initially the surgeon was unsure as to whether Lyrissa's right kidney would need to be removed. Later, however, when I talked with her oncologist after the two had consulted, it sounded like the plan was to indeed remove the right kidney. This is actually probably a good thing because they believe that this tumor may have first started inside the kidney, which is apparently rare for neuroblastoma. Because of the nature of Lyrissa's tumor and its make-up and aggressiveness, it would be at a high risk to re-grow in the ORIGINAL site. With the kidney removed, the original site is gone.
As we have learned in this process, a relapse would be very bad news, and it is our constant prayer and hope that this aggressive and difficult treatment ensures that all neuroblastoma cells are eradicated - never to return! Thank God that for the most part, Lyrissa's tests show no bone or marrow involvement.
On a bright note, Lyrissa got to play on the swings at the park this weekend - the first time in months! It was so wonderful to see my beautiful baby smile and laugh, and point up at the sky and say, "Mommy yook..clouds!" It has been so long since she's seen the blue sky. What a blessing for me to have.
Anyway, please pray for wisdom for the doctors tomorrow (5/24), and strength for Lyrissa, and courage for us as we see our precious little one endure yet another bout of suffering. She is such a fighter! Thank you.
Thursday, May 19, 2005 2:37 PM CDT
Well we did get released (ok, discharged :)) yesterday around 5pm, and I am now back here as Lyrissa is undergoing her MIBG scan with sedation. I will post more in the next few days, as we will be back here Monday for a check-up to prepare for her surgery. Thanks for all your prayers!
Wednesday, May 18, 2005 12:06 AM CDT
Ooops! Disregard my last post from earlier today! We may be here a little longer. Another obstacle has come our way. Shortly after my last post, I changed Lyrissa's diaper and, without giving you the wonderful details, Lyrissa has a sore in her diaper area which concerns the doctors.
We are waiting now to have either dermatology and/or infectious disease come and take a look and make a decision on the course of treatment. I'll post more when they are done. Although we were excited about getting out today, we don't want to leave if they feel it is serious enough to stay inpatient for treatment. Poor Lyrissa, no wonder she has been unhappy so much lately!
Wednesday, May 18, 2005 10:27 AM CDT
We get to leave today!! Lyrissa's ANC (absolute neutraphil count) is 1326, her cultures have not shown anything, and her fever has not come back! She is going to get an injection for her MIBG scan which is tomorrow at 1:00, and then I think we'll be discharged.
We'll be outpatient again tomorrow for her scan, but at least we should have the weekend at home to rest up for her surgery on Tuesday.
We pray that her surgery goes well, and that they are able to completely remove the tumor (which has gone from about the size of a grapefruit at diagnosis to a golfball now according to her scans last week).
Lyrissa's doctor has told me that if they are able to completely resect (remove) the tumor, that is a huge step in the road to her recovery.
Lyrissa's spirits are a little better now, and I look forward to her continual improvement. She continues to be a blessing and a joy, even on her down days!
Monday, May 16, 2005 8:06 AM CDT
We're back! Lyrissa woke up this morning with a fever and we came back in around 7:00 a.m. I know she is neutrapenic right now, so chances are until her counts recover, we'll be here. Her blood work will come back later and we'll see what, if anything, the cultures show.
At least she was able to have a good few days at home. She is really feeling bad today, and I can't wait for them to get some medicine in her to perk her up. Hopefully we won't be stuck here until her surgery on 5/24, but we might. I am assuming they will still want to do her MIBG scan this Wednesday. Last week's scans showed "significant decrease" in the tumor's size. I'll post more tomorrow when we see what her labs have shown.
Wednesday, May 11, 2005 2:07 PM CDT
Today we are at A.I. for Lyrissa's bone scan with sedation. Yesterday after she had labs drawn at home, they called to tell me she needed blood and platelets and they were going to try to fit them in around her scan today. So instead of being here at 11:30, I had to bring her in at 8:00 a.m.
Today I really had to dig down deep to find strength. First of all we were late. Lyrissa has to refrain from eating six hours prior to these scans because of the sedation/anesthesia issues. She is having such a tough time with her moods, and although she could have eaten this morning before 7:00 a.m., something made her mad and she didn't want to eat.
When we got here, I had to feed the baby, which made her even more mad. She then had to get her blood drawn (they always do a "type and screen" prior to giving transfusions), and then kill about an hour before she got her dye injection for the scan. Poor Lyrissa - nothing could console her today.
They decided to give her platelets after the injection, but before the scan. Then she got sedated for the scan, and the red blood cells in recovery. They are doing this to try and minimize the amount of time she is here. Also, there is a slight possibility that they may try to do the CAT scan today while she is still sedated, rather than Friday when it is scheduled.
For most of the day, Lyrissa has been extremely unhappy and it is impossible to calm her down. It is hard to hear her scream and see her upset all the time. Even as she and Nicholas and I cruised around the hallways in the wagon (her favorite thing to do), poor Lyrissa still cried.
We hope they can do both the bone scan and CAT scan today, so to minimize her misery. Next week is another scan called an MIBG, which entails another injection and more sedation and fasting.
Friday, May 6, 2005 6:24 AM CDT
We should be leaving today around 6:00 p.m. after Lyrissa's 24 hour hydration is completed. This week as a whole was tough for Lyrissa; she didn't seem to feel well physically or emotionally all week. She has had to endure nightly hourly diaper changes as they monitor her fluid output very closely with these particular chemo drugs. Maybe a lot of her unhappiness right now is just agitation with being "disturbed" so frequently.
We have not had any more episodes of vomiting, although apparently with the Cisplatin, vomiting is often delayed, so she may not feel well this upcoming week. (But hopefully Lyrissa will prove them wrong!)
Next week is at least one of her scans and her counts should begin to drop within the next 7-10 days.
Tuesday, May 3, 2005 5:48 PM CDT
Lyrissa did okay today but during the night last night she had some vomiting. They are stepping up her anti-nausea drugs, and when she woke up this morning she ate cereal and didn't get sick during the day. One of the chemo drugs - Cisplatin (sp?) is known to be one of the ones to frequently cause nausea.
Unfortunately Lyrissa is still very irritable, and one of the anti-nasuea drugs is a steroid which can produce mood swings they tell me. Lyrissa is mostly just as sweet as ever, but then there are times, (usually when it is time to feed Nicholas) that Lyrissa becomes very upset. I am trying to keep her preoccupied with her books, tapes, and coloring, etc., to help her with the boredom. One of Lyrissa's doctors says Lyrissa has probably "just had it" with being in and out of the hospital.
Luckily, Lyrissa has a team of wonderful nurses who help to take great care of her and treat Lyrissa as a whole person, not just her physical symptoms. They really care about Lyrissa and us as a family, and often help me out througout the day so I can get a short break to eat, make a phone call etc. We are very appreciative of those things. They also welcomed little Nicholas here, and often times during the day he cruises around the unit with someone who is happily cuddling him.
Lyrissa has a bunch of scans next week and the following week, so she will be in and out of here on an outpatient basis. All of them require sedation so she will be still. They are doing these scans to thoroughly assess the tumor's size so they will be prepared for her surgery on 5/24.
Monday, May 2, 2005 3:55 PM CDT
Well, we are back at A.I. for Lyrissa's fifth round of chemotherapy. Her counts were good to start chemo and she is being hydrated now in preparation for the chemo to begin. Lyrissa's doctor has informed me that Lyrissa's surgery is scheduled for Tuesday, May 24. We hope that her counts have recovered by that point, that no fevers or other complications have occurred, and that all of her tests and scans show continued shrinkage of the tumor. Lyrissa's doctor has told me that he can no longer physically feel the tumor in her side, so that is a good thing. In addition to her response to treatment, our strongest prayers are for no relapse following completion of treatment.
Lyrissa is enjoying her new home, and she seems to be feeling better and is always glad when she is home. Her eating has dramatically improved, and she had no vomiting with this last round of chemo. (That makes me wonder..were all of her previous struggles with vomiting related to the TPN?)
This current round of chemo uses the same drugs as the third round did, and the infusion period is a little longer and different. She is also given a "rescue drug" called Mannitol to protect her kidneys from damage. I still am not sure what the results were of her kidney scan several weeks ago, but it most likley shows some (hopefully slight)decreased function.
Thanks for all your thoughts and prayers as we move forward with Lyrissa's treatment. We also pray for several other families we have gotten to know who are also watching their children battle this disease. One family in particular is currently in the stem-cell transplant phase (and were also referred to CHOP) and facing all the normal and expected, but still very scary, side effects of the super-high doses of chemo. Their little daughter's name is Grace. Please say a prayer for their family, too. Thank you.
Thursday, April 28, 2005 7:31 PM CDT
Well, right now things are a little crazy, so I haven't gotten a chance to update. We were discharged yesterday afternoon after some more platelets, and Lyrissa is doing well.
For those of you who may not have known, in the midst of all of this, we were having a home built in the Dover, Delaware area. It has been more than a little hectic, but we are excited to have a home that will better suit our needs for Lyrissa and Nicholas. We started this process way back last summer (a million years ago!) and moved forward with it because it is something we felt was important for our family.
We moved yesterday and make settlement on our new home tomorrow. Last night and tonight we have been staying here in Wilmington in the Ronald McDonald House, which they were nice enough to provide for us to help us out with our transition. This way, we are in a nice clean place and close to the hospital. (Although Lyrissa's counts were up enough to leave, she is still very vulnerable to infection.) We also still have all of the medication, shots, etc., and the refrigeration of it to worry about while we are in transit, so it makes it much easier to be here. Also, from now on, when we are inpatient we will be styaing here as well.
Lyrissa will get her blood drawn tomorrow and then again Monday morning 5/2, to make sure she is ready to start the fifth round of chemo scheduled for that day. If not, they'll just push it back a few days.
For now, we are enjoying all being together and out of the hospital. Feel free to email us at gregbray0227@cs.com for our new address and phone number.
Monday, April 25, 2005 10:04 PM CDT
We are STILL here! Unfortunately Lyrissa only has five neutraphils today, and she needs at least 500 to leave! Come on white cells, we want out of here! :)
Poor Lyrissa is really touchy these days, which is probably a combination of a lot of things; some of the chemo drugs cause "mood swings," she probably isn't feeling good since she is neutrapenic, she wants to be home or playing outside, and of course, SHE IS TWO! Also, she now shares her time with little Nicholas, who is also here and probably doesn't want to be! (Nicholas is trying to figure out how he wound up back in the hospital - he thought his hospital days were over after his three-day stay following birth!)
Anyway, they did Lyrissa's GFR (kidney function test) today, which wasn't too bad at all. They injected her with dye in the nuclear medicine area, took a few pictures, and then came up to our room every hour to draw blood.
Lyrissa got platelets this evening. Please say a little extra prayer for Lyrissa's spirits to be lifted. Next round of chemo is only a week away. Thanks.
Friday, April 22, 2005 10:57 PM CDT
We're still here but Lyrissa is feeling much better and was fever-free today! She ate a total of three bowls of Cheerios with milk throughout the day. That is more than Lyrissa has eaten in a very long time, and we are very pleased. We will definitely continue with the appetite stimulant, Megase, as well as pain meds as needed and the Magic Mouthwash.
Because Lyrissa is still neutrapenic she won't be allowed to leave until her counts are up. For some reason, once you are admitted with a fever you are stuck here until your counts recover, even if all of the other issues have resolved. So far, none of the cultures have shown anything.
Lyrissa's GFR test (six-hour kidney scan) was rescheduled until Monday at 9:30. We wonder if we will be inpatient or outpatient by then? We will just have to wait and see.
Thursday, April 21, 2005 8:00 PM CDT
Lyrissa got started on two strong I.V. antibiotics last night - they are the same ones she has been on before. Today she didn't feel too good because of her mouth sores. So far, they are no where near as bad as they were in January, but even one can be so painful. The mouth sores also discourage her from eating because of associated pain. However, she did eat a little bit of baby food fruit today. This time, we are using a numbing medicine for her mouth called Magic Mouthwash. It tastes like bubblegum and contains lidocaine and she is okay about taking it.
So far, the cultures haven't shown anything, but Lyrissa has an ANC of zero right now, (she is neutrapenic) so they can't let her leave until some of this gets resolved. I have asked for her pain medication (which this time is codeine by mouth) to be given around the clock, rather than as needed, because I learned the hard way in January that we need to stay ahead of her pain.
They are still wanting to do Lyrissa's GFR test (6-hour kidney scan) tomorrow at 9:30, but I am not for this because Lyrissa does not feel good right now. They've reminded me that this test is part of her protocol and it needs to get done before her next round of chemo. My response: let's reschedule it for next week, when she is hopefully feeling better...At this time, Lyrissa's comfort is my primary concern! We'll see what happens...
Thanks for your support and prayers.
Wednesday, April 20, 2005 4:37 PM CDT
Well, unfortunately we are back at A.I. This morning Lyrissa awoke very irritable and warm and she had a very low-grade fever of about 99 degrees. They don't really consider it a true fever until it is 100.5. But they saw Lyrissa in the outpatient clinic anyway, drew blood cultures, gave her fluids and monitored her all day. The doctor noticed some mouth sores, so they gave her codeine orally, and were planning on discharging us later in the day.
However, they were unable to find any area pharmacies that carry codeine only (that is, without Tylenol in it), and they don't want her having Tylenol which could mask a fever. A fever is sometimes the only sign of infection, and they don't want to suppress it until they know what's going on. Also, Lyrissa has a low white count right now, so they decided to keep her. Originally it was just going to be overnight, but now they've started her on an antibiotic, so who knows what the length of our stay will be this time. The cultures generally take 24-48 hours to grow anything, so it is likely we may be there at least that long. Will update when we know more tomorrow.
Tuesday, April 19, 2005 8:58 PM CDT
Lyrissa is continuing to feel pretty good. Her counts haven't wiped out completely yet. She is still enjoying being home and playing with her toys, etc. Her eating is picking up but her food choices are pretty limited, so we're working on that now. She is on a drug called Megase to stimulate her appetite.
On Friday she will have her GFR test, which I understand is pretty much an all-day procedure. They will inject her with dye and draw blood each hour to assess her kidney function. I think that is basically how it works. It is just a routine test (part of the protocol), but unfortunately it means we'll be stuck at A.I. for most of the day. But at least it's outpatient and not inpatient!
Monday, April 18, 2005 6:44 PM CDT
Today Lyrissa had outpatient labs drawn and she also was weighed. Unfortunately, she has lost a pound or two, but luckily, they just sent us home with a prescription for a different type of appetite stimulant, and NO TPN! So, on the way home, I took Lyrissa to McDonald's. I had just planned to go through drive-thru, (since her diagnosis, we've avoided any sort of place where she could be exposed to illness). But Lyrissa started to fuss to go inside. I gave in, and took in her inside, and just found a little corner where there weren't a lot of people.
It was so nice to see her out, having fun, enjoying her Happy Meal, and watching all of the people. It was well worth it, and nothing that some good alcohol wipes couldn't control! It was so enjoyable to do something normal; I think I have said before, it is amazing the things we used to take for granted.
Anyway, as part of her protocol, Lyrissa will have a GFR test this week, which I believe is just a scan of her kidneys where they inject dye. I don't even think she has to be sedated for the test. We also will have her home care nurses several times this week for labs. We continue to give her evening shots in the leg of GCSF to stimulate her counts to recover.
Lyrissa also took lots of walks over the weekend, and really enjoyed being outdoors.
Friday, April 15, 2005 2:08 PM CDT
We got good news this afternoon - we can leave! The cultures indicated that the infection was most likely just a contaminant from the lab, so there is no need to keep Lyrissa on the antibiotic.
Even better news - they are not sending Lyrissa home on TPN (intravenous feeding)!!! They are going to carefully monitor her weight and her electrolytes to make sure she is receiving adequate nutrition, and she comes to the outpatient lab here on Monday morning to be weighed and have blood drawn. Of course, there is always the possibility that TPN may need to be restarted and readjusted, and that's okay. But for now at least, they feel that she is eating enough to give her chance without it.
Our next admission is scheduled for May 2 for her fifth round of chemo...then we prepare for surgery with all sorts of scans, imaging, etc., to assess the tumor's size. Then another round of chemo, and then we prepare for the toughest part of therapy thus far - the very high doses of chemo which completely wipe out her system, and then the stem cell rescue/transplant. This is the best chance we have for fighting this disease - aggressive treatment at diagnosis. Please pray that Lyrissa responds, that is, does not ever relapse with this terrible cancer.
Thursday, April 14, 2005 9:15 PM CDT
Lyrissa's chemo ended this afternoon, and the doctor initially said we could leave tomorrow. Unfortunately, shortly after that, they told me that one of Lyrissa's blood cultures showed a slight infection, but that it may have just been a minor contamination from the lab. They have to wait about 24-48 hours to determine if that is indeed the case. In the meantime, they started her on an antibiotic just to be on the safe side. Anyway, that cancels the possibility of going home Friday, but it hopefully won't extend our stay too much longer.
Lyrissa's red blood cells were also low today so they are giving her a transfusion this evening.
Her counts should begin to drop soon, but for now she still had a nausea-free day, and is eating well. We also pray for no mouth sores, which Lyrissa struggled with so much in the beginning.
Lyrissa has been enjoying coloring and playing with many of the staff members at the hospital. Her cheerful little spirit always lifts everyone up!
Wednesday, April 13, 2005 8:59 PM CDT
Lyrissa is doing well today - her slight fever last night did not resurface, and the cultures they drew have not shown anything yet. Today she continued playing and eating well.
Her doctor is already hoping to plan ahead for her surgery, which takes place after the next round of chemo. The next round of chemo would ideally take place 21 days after this round began, which was 4/11. This is, of course, assuming no fevers or infections occur between now and then. We hope nothing like that happens!
During the day, baby Nicholas hangs out at the hospital with Lyrissa and me, and at night we take turns staying at the hospital with Lyrissa or home with Nicholas. Lyrissa enjoys being with her baby brother, and although it is not the situation one would ever "plan" for their children, at least we are together, and that is all that matters to me!
Thanks again for all the prayers and wonderful guestbook messages; they are a real source of support for me. Margi
Tuesday, April 12, 2005 9:22 PM CDT
Lyrissa is feeling good and enjoying playing, singing, reading books, and watching Barney - her favorite! Also, her eating continues to show steady improvement, and that is such a good thing to see. (During her chemo, she does not receive her TPN (intravenous feeding), because she is already getting lots of fluids and the added fluid from TPN would be too much.)
Once her chemo infusion is complete, she receives 24 hours of fluids, and then, if there are no problems, she can go home.
Tonight Lyrissa felt warm and had a very low-grade fever. They took some blood cultures to see if anything is going on. It could be nothing, but we will have to wait and see. She didn't seem to be feeling bad, so it may have just been nothing - hopefully!
Monday, April 11, 2005 6:11 PM CDT
Lyrissa began her fourth round of chemo today..so far so good, but the actual infusion didn't get started until late afternoon. They first hydrate her with fluids for several hours. We will probably be here until at least Friday, as the chemo is a three-day process.
Lyrissa enjoyed a beautiful last four days at home, and got to go on nice long walks each day, which really makes a big difference. It's funny the things that you never realized you took for granted before!
Thursday, April 7, 2005 8:17 PM CDT
Lyrissa had her tempoary catheter removed yesterday, and we were only up at Children's Hospital for about an hour. It was a little uncomfortable for her, but she is a good sport.
Today Lyrissa and Nicholas took a walk outside, and Lyrissa loved the fresh air and sunshine.
Lyrissa will return to A.I. on Monday, 4/11 to begin her fourth round of chemo.
Thursday, April 7, 2005 8:17 PM CDT
Tuesday, April 5, 2005 8:55 PM CDT
We were back at Children's Hospital today for more of the same procedure; Lyrissa was hooked up to a machine for about four hours as they drew her blood to retrieve her stem-cells. Thankfully, she slept most of the time, because the procedure requires that she not move around a lot, and that is hard for any two-year-old!
We received word later in the day that they got a great collection on both days, and there is no need for any additional collection! What a relief! We will, however, still need to be back up at Children's Hospital tomorrow at 8 am for Lyrissa to have her temporary catheter in her neck/chest area removed. They will do that quickly and without anesthesia; but it should not be too painful.
We will now wait for word from Lyrissa's primary oncologist here at A.I. as to when they will begin her fourth round of chemo. We are already a little bit beyond the 21-day mark from the last treatment, so we expect that we will not get too much of a break before we will be back in again. But for now, Lyrissa is really enjoying her time at home and her new role as big sister. And, since her TPN (intravenous feeding) has been reduced, she is eating (a little) more, and, most importantly, her daily vomiting (associated with the TPN) has not occurred. Mornings are now much more pleasant for Lyrissa!
Tuesday, April 5, 2005 5:22 PM CDT
Hi Everyone!
Check out the new photos I put on the website! I don't think Margi has even seen them yet!
Claire
Monday, April 4, 2005 9:27 PM CDT
Lyrissa went to Children's Hospital today, and had a brief procedure under anesthesia to place a catheter in her chest/neck area. She then went to recovery and then onto the stem-cell collection area, where she was hooked up to a machine for about four hours and her blood was collected. (She was also given replacement blood during that time, so she really had no significant net blood loss.)
We met the doctor who will be performing her stem-cell transplant/rescue later in her treatment. We should know tomorrow how the collection went, and they will collect more from her tomorrow as well.
Lyrissa had a rough evening, as she was still coming off of the effects of the sedation/anesthesia, and she was very irritible and tired. (To make matters worse, we got a flat tire on the way home!) But we are so thankful that Lyrissa is home and and not in the hospital right now, that nothing else matters!
I will post more tomorrow when we should have a better knowledge of the success of the stem-cell collection. Thanks for your prayers!!
Friday, April 1, 2005 2:38 PM CST
Lyrissa is continuing to feel good, and the plan is still for discharge on Sunday, and up to Children's Hospital on Monday for her stem-cell collection. We will be so relieved once that milestone is reached!
Lyrissa is now receiving GCSF and GMCSF shots which work to stimulate her counts to recover. This is essential in order to retrieve good stem-cells for her eventual transplant. Lyrissa does well with the shots (which are given in her leg) and actually does better WITHOUT numbing cream. The numbing cream would just make her more anxious, as she began to learn that it was associated with upcoming pain. We're told that with kids her age, sometimes it is best to just give the shot alone, and that has worked a lot better for us.
Lyrissa has been visited by several types of therapists to help her with some of her eating issues. They have also given us suggestions and advice to encourage and support Lyrissa's eating. She may associate food and eating with pain and nausea, as she had such a tough time early on with mouth sores and vomiting. The goal is to get her to begin to try new foods without becoming upset or scared. Tough little Lyrissa is getting there...slowly but surely, and she is working so hard! She is also being given an oral medication to stimulate her appetite.
One good thing I forgot to mention, is that since her admission last week, they have withheld her blood pressure medicine to see how she does, and happily, her blood pressure is still registering as normal! One less medication she has to take, at least for now!
Wednesday, March 30, 2005 9:39 PM CST
Things with Lyrissa are about the same, but it is nice to have her feeling better and fever-free. We are still in the hospital, and will probably be at least until Sunday. Lyrissa's doctor would like to try and have her discharged on Sunday, so that we can be prepared to then go up to Children's Hospital (Philadelphia) on Monday morning for her stem-cell collection.
This morning her counts had crept up just a little, but she is still considered neutrapenic. (She has to have what is called an "ANC" or absolute neutraphil count of at least 500, before she is not neutrapenic.)
She is still continuing to receive two antibiotics - Vancomisin (sp?) and Sefapine (sp?) intravenously to fight her infection. As for her TPN (intravenous feeding), they are continuing to gradually decrease the volume and the time that it runs, and we have noticed that Lyrissa is taking more of an interest in eating, although it is still not where she needs to be calorie-wise.
We are keeping ourselves focused on the hope that Lyrissa's counts will be where they need to be for Monday, April 4th, and that she continues to show interest in food. Thanks everyone for praying for us!!
Tuesday, March 29, 2005 8:35 PM CST
We are still at A.I., but the good news is that Lyrissa's fever was caused by a fairly common infection that they are treating with intravenous antibiotics. Her doctor wants her to stay in at least until Sunday, because, in addition to the infection, she is neutrapenic (zero white counts). Despite this, she hasn't had a fever in several days, and is back to her old self again.
We have expressed our concern regarding the particular aspect of her care involving her intravenous feeding (TPN), and finally feel that we are moving forward with a plan and goals for her eating. The G.I. doctors, along with nutrition and dietary, are working with us now to develop a plan to encourage Lyrissa to eat more, and they are reducing her TPN (intravenous feeding). We are so happy about this, as we believe that Lyrissa's appetite can be stimulated and will return, if just given a chance!
Fourteen hours of intravenous feeding seemed too much! We believe Lyrissa can, and will, get back to her regular way of eating, it just may take some work on our part, as well as time, and patience. We also realize that she needs to be nutritionally sound to get through her chemo, and of course we realize that there is a need, at least for now, for some of the TPN.
The plan now is to try to do the stem-cell collection beginning April 4th up at Children's Hospital. It is still going to depend on her counts recovering, but Lyrissa's doctor here at A.I. is working closely with the transplant doctor at Children's to monitor her situation.
Sunday, March 27, 2005 8:43 AM CST
Unfortunately, we've had some more setbacks. On Friday, we learned that Lyrissa's counts still aren't where they need to be for the stem-cell collection this week. They are now looking ahead to maybe April 4th to try it. Who knows?
We also learned that her platelets were low, so we went into the hopital (outpatient) just to get her a platelet transfusion on Friday evening. What a relief to be able to leave several hours later. BUT...we got home, and made it only until about 3:00 a.m., when poor Lyrissa got a fever, had to be admitted, and back we went to A.I. (This is getting old!)
Saturday she slept most of the day, and the cultures they drew will most likely not come back for about 48 hours. So that means she remains in the hospital until the source of the fever (if there even is one) is determined. We PRAY TO GOD that it is not another central line infection which would cause her central line to have to be removed; she just had this one surgically placed on March 9th.
Right now, there is nothing to do except take each day at a time. Everything about her treatment and her response to treatment is unpredictable. It is hard to remain positive, but when I was really feeling discouraged Saturday, one of Lyrissa's doctors, Dr. Edelson, reminded me that in the whole scope of things, Lyrissa is doing well, and that she is getting through this slowly but surely. All children respond differently, and apparently Lyrissa's trials and tribulations are not out of the ordinary, nor too serious/severe.
Rumor has it that the Easter Bunny may have left something at A.I for Lyrissa, so hopefully she has a real good Easter!!
Friday, March 25, 2005 7:13 AM CST
Happy 2nd Birthday to Lyrissa! Yesterday Lyrissa celebrated her 2nd birthday!! Thank you to everyone for the birthday wishes, cards, and gifts! I can't believe it has been two years since beautiful, sweet Lyrissa came into this world!
Lyrissa had a great day, laughing and playing with her Aunt Claire and her "Ga" (Grandma). Even though Lyrissa can't have a birthday party with friends, she had her family here to celebrate with her and that made everything all right. She is still just as happy and cheerful as ever, despite everything she has been through. At times, when Lyrissa is happy and playing and smiling, you could almost forget that she is being treated with chemotherapy to fight cancer - she just keeps right on going!
Lyrissa still has some vomiting in the mornings and they are exploring the possibility that it could be related to the TPN (intravenous feeding). My goal is to get her off of that TPN, if she would just eat more! It is hard, because many of the things that Lyrissa used to love are now unpleasant for her such as enjoying food, trying new foods, and her baths. She screams during bath time, and I think it is because she is just scared and vulnerable. Also, her hemoglobin gets low, and she gets chilly very easily and shivers. We try to make it as fun as possible and yesterday her Aunt bought her more bath crayons to try to keep her busy.
Anyway, we are still planning to go up to Children's Hospital next week, but Lyrissa's doctor told me yesterday not to be surprised if it were delayed because her counts haven't recovered enough. Today, they will get more labs (the home care nurse) and call me with her counts later in the day. If everything is okay, we will start giving her the two shots daily on Saturday to boost her counts up to the level they need to be to do the stem-cell collection.
We really hope that nothing is delayed. Each step makes us feel that we are getting closer to our goal of having her better again. Every delay or complication makes it hard to stay upbeat and positive. However, with Lyrissa's cheerful personality around us, it makes it easier to cope.
Tuesday, March 22, 2005 9:24 PM CST
Lyrissa is still at home and she is doing well, although she is neutrapenic right now (has a zero white cell count) and has to be very careful to avoid infection - our biggest enemy in this whole process.
We have received a slight change in Lyrissa's plans. Lyrissa's stem cell collection and eventual transplant are going to take place at Children's Hospital of Philadelphia. I have talked with the doctor there who will be performing Lyrissa's stem cell collection, scheduled to begin Tuesday, March 29th. We are to arrive there early morning and she will have a minor procedure to insert the stem-cell catheter into her chest, and then the collection will begin. It is actually done on an outpatient basis, so we will go home that day. They will then call us, let us know how the collection went, and we will return the following day, most likely to gather more cells to have on hand. We go home again that day, and then hopefully return on Thursday just for removal of the catheter.
This coming Saturday, we will have to begin giving Lyrissa two shots per day (ouch!) - one of GCSF and another of a similar drug, intended to stimulate her counts. This is a little different from how they were planning to do it here, but apparently the doctor in Philadelphia handles the stem-cell harvesting this way. We have heard many good things about Children's Hospital and this particular doctor, so we believe Lyrissa will be in good hands.
Lyrissa will still continue to receive her chemo treatments and surgery, etc., at A.I., with the same wonderful doctors and nurses we have had thus far.
Shortly after the upcoming stem-cell collection, her fourth round of chemo will begin.
Hopefully all will go well, and we pray Lyrissa's counts recover in the way they want/need them to for her collection, and that we can then move on the the fourth round of chemo, with no major problems.
Lyrissa is enjoying her new role as a big sister and Nicholas is adjusting to his new world. Thank you all for your nice comments and continued support of my family. Margi
Sunday, March 20, 2005 10:22 PM CST
Lyrissa and Nicholas are both home with Mom and Dad! Lyrissa is happy and seems to be feeling good, and Nicholas is a wonderful baby!
This new situation will require lots of energy and attention, but will undoubtedly be filled with lots of joy as well.
Lyrissa will have her stem cells collected towards the end of March, and several days later will begin her fourth round of chemo. Hopefully, she will be able to enjoy a week or two at home until then without any major problems.
Thank you to everyone for their continued love and support, and for warmly welcoming Nicholas into the world! Thank you!
Friday, March 18, 2005 8:17 AM CST
Lyrissa is a big sister!!! Nicholas Christopher Bray was born March 17, 2005 at 8:49 am! He weighs 7 lbs 8 oz and is doing fine! Margi is good too. She had a scheduled c-section and she is recovering from that. Nicholas would've been born the 17th even if he hadn't been a scheduled c-section because Margi went into labor on her own the night before. He is a good baby and hasn't really cried yet at all. He is going to have an ultrasound of his kidneys today because he had hydronephrosis in utero which seemed to go away but they want to be sure. It is just a swelling of the kidney as they learn how to function. Margi should get to come home Sunday. Greg is with Lyrissa at A.I. duPont hospital. She was supposed to come home yesterday but got a low-grade fever so they are keeping her for a while to give her antibiotics. Greg's family is coming up today and Margi's mom will be up Monday. I have taken a bunch of photos of Nicholas but I'm not sure if I can download them on Margi's computer. I may not be able to post them until I go back home in about a week. I'll keep you posted on Nicholas and Lyrissa's progress! Claire
Monday, March 14, 2005 7:10 PM CST
We are still in the hospital, but Lyrissa is doing okay. They are keeping us for a couple more days just to monitor her TPN (intravenous feeding) to make sure she receives the right amount of nutrients.
Yesterday Lyrissa had a lot of vomiting, so they've adjusted some of her drugs to help with that. She usually takes a drug called Zofran, and now is being given a combination of Benadryl and Reglan in addition. The Benadryl makes her sleepy, but she is still in good spirits. Right now she is struggling with a painful diaper rash, but so far, no mouth sores. (Hopefully none this round!)
Tomorrow she is going to have an MRI of her head and neck just to be sure that there was no yeast involvement in that area from her recent central line infection. Lyrissa's doctor is not expecting anything, but he just wants to be sure - and that is fine with us! Unfortunately, she will have to be sedated (again) for this test, but it won't be for too long.
It looks now like we may be discharged Wednesday, but as we've learned, nothing is certain, and we just try to go one day at a time!
Saturday, March 12, 2005 6:49 PM CST
Lyrissa's chemo ended today, and tonight and tomorrow she will receive fluids. She also has been receiving a "rescue" drug called Mannitol which is intended to protect her kidneys from the damage that the chemo can cause. She is still feeling well, but has some vomiting during periods of the day. Lyrissa does not let that stop her from playing and laughing and having fun; she just keeps moving right along!
Again, the side effects of chemo will not really be at their worst until about a week from now when her counts have fallen, and our biggest hope and prayer is that she is spared from the horrible mouth sores and fevers she had the first round. We are also praying that her upcoming stem cell collection goes well; that they monitor her counts and get her stem cells at just the right time for the harvest. This is important because of her transplant down the road.
Lyrissa's doctor says he is going to restart her TPN (intravenous feeding) tomorrow. (It has been on hold because of the need to monitor her fluids so carefully.) During our stay she has not eaten much, so it is necessary to put her back on TPN to support her nutritionally. They said the dextrose in the TPN has to be stared gradually and monitored, so now she is scheduled to go home sometime on Monday.
Thank you everyone for continuing to think of and pray for Lyrissa!
Wednesday, March 9, 2005 9:15 PM CST
Today Lyrissa began her third round of chemo. The drugs involved in this round (and the fifth round) are different from the others she has received. One of the drugs is called Cisplatin and the other is called Etoposide. These drugs apparently can be tough on the kidneys and affect the body's fluid balances. So they monitor Lyrissa's vital signs regularly during the infusion, give her lots of intravenous fluids, and make sure her urine output is sufficient.
She also continues to receive all of of her pre-medications for nasuea, etc. Tonight her hemoglobin dropped a little bit, so they gave her a transfusion about 8pm. She had some vomiting in the evening too.
These chemo drugs infuse during most of the day, but not 24 hours like the past treatments. After four days, she receives a day of fluids, and then if she has no problems, she most likely can be discharged.
Tuesday, March 8, 2005 11:24 AM CST
The last several days have been tough on Lyrissa in terms of getting (and losing) IVs. She has had to be "stuck" multiple times in hands, feet, etc.,in attempts to get her blood drawn and IVs in place. Poor Lyrissa, she feels like a pin cushion!
Thankfully this morning Lyrissa had surgery to replace her central line!! So far she is doing well and recovering from the anesthesia. The line was placed on the opposite side of chest as the last line.
The doctors determined that the type of yeast that Lyrissa had in her system was a fairly common type, and did not need the aggressive treatment of the Ableset she had been receiving nightly. So she will now be treated with a less serious drug, just to be sure they have cleared up the infection.
Other than all the needles she has had to endure, she has been feeling pretty good! They will now monitor the central line, and probably start her third round of chemo maybe tomorrow. We are praying that no other glitches come our way!
Friday, March 4, 2005 3:39 PM CST
Lyrissa's IV in her hand went out. This is to be expected - they cannot last long. Unfortunately, she had to go through another stressful morning, while they attempted to find another vein, draw blood, and replace the IV. Luckily, though, Lyrissa had the same excellent IV nurse, and another wonderful nurse from her floor (and mommy again!), and we finally got it in. This time, she has a "board" on her hand and wrist area to help keep it straight, and hopefully get a little more mileage out of this one. Once finished with that ordeal, Lyrissa got to pick a toy out of a toy box, and she picked a toy scalpel and a yellow toy wrench. I think she is preparing to arm herself for the next needle stick!
Lyrissa's doctor is still hoping that by early next week they can replace her central line. She is doing okay with the nightly doses of Ableset, and hopefully the yeast is clearing up. Her MRI was supposed to be today, but to give her a bit of a break, it's on hold til next week.
Lyrissa is still nibbling at various foods, but not eating much, so getting her to eat more is our goal for the next few days.
Thursday, March 3, 2005 7:13 PM CST
Lyrissa is feeling better now that her central line has been removed and the infection is being treated. This morning she had drops put in her eyes so that an ophthamologist could look to see if they thought any fungus was present behind the eyes. The ophthamologist thought one pupil may have been little bigger than the other, but they don't believe that this is anything significant. Just to be sure, Lyrissa's doctor is going to double check her head and neck area with another MRI.
After that, Lyrissa had an echocardiogram to check for the presence of fungus/yeast in the heart area. Apparantly, yeast can be very dangerous and hard to treat once it is in the bloodstream. Thankfully, the echocardiogram was negative for yeast around the heart.
Later, a nurse from the IV team had to find a vein in Lyrissa's foot so they could draw her labs. This is because she doesn't have her central line, and although she has an IV in her hand, using it to draw blood can apparently weaken it. Anyway, even though having blood drawn from her foot was not fun, Lyrissa had an excellent IV nurse and her own nurse from her floor (and mommy) to help out, and she did fine. Luckily, they were able to get the cultures they needed.
A doctor from Infectious Disease thinks that maybe the central line can be replaced sometime early next week, but the course of antibiotics has to run for two weeks. Once the new central line can be put in place she can resume her chemo treatments.
Lyrissa took a wagon ride down to the cafeteria. It is so important for her to begin eating, because she is no longer receiving the TPN (intravenous feeding) since she has no central line. Fluids are being administered through the IV in her hand.
On a very good note, Lyrissa's doctor showed me a report of her bone scan from last Friday (2/25), which read that there was no evidence of metastatic presence (cancer having spread) in the bone, and that the previously questionable areas (the thigh, tailbone, and ear) were no longer seen. What a blessing to read those words!
Wednesday, March 2, 2005 3:44 PM CST
Last night Lyrissa still had a high fever (it got up to 104) and vomiting. This could have been reactions to the Ableset, though, and she was monitored very closely throughout the two-hour transfusion and throughout the night.
Later in the morning, she began to feel better...just in time to be put under anesthesia to have her central line removed. She had her surgery about noon, and the line was removed, and the bone marrow aspiration was done, as well. She made out ok; her breathing is a little fast and she has some congestion because she had to be intubated in case of vomiting. She is being given some oxygen too. Also, an IV was placed in her hand so that some of her meds and blood draws can be done this way. Chemo and IV feeding can't be done this way, however.
They are not sure at this point how long it will be before they can put another central line in, and/or how long before the infection is cleared up. Her oncologists are consulting with infectious disease specialists on how to move forward. They also want to do another echocardiogram to make sure they don't see any yeast around her heart area, although they said that's probably not likely. Either way, she will be in A.I. for a while this time, because the Ableset, which is given nightly, must be monitored closely for side effects.
Hopefully Lyrissa's third round of chemo is not delayed too significantly, so we can continue fighting the tumor.
Tuesday, March 1, 2005 6:05 PM CST
Well, things did not go as we planned. Lyrissa awoke in the middle of the night Monday night (Tuesday morning) with a 102 degree fever and vomiting. After being admitted, Lyrissa was treated with some broad spectrum antibiotics, and blood was taken. She was also tested for a variety of flu viruses that are going around.
On Tuesday morning they x-rayed her chest to make sure nothing was going on there. Originally, they figured they would treat and solve her fever, and then hopefully by Thursday, do the bone marrow aspiration and begin her chemo later that day....
BUT, later today, Lyrissa's doctor told me that the cultures they drew indicated that there is an infection (yeast) in her central line, and that tomorrow, they will be surgically removing her central line. During the procedure, they will also be taking the bone marrow aspiration.
What this means is that Lyrissa's next round of chemo is going to be pushed back until they can effectively treat the yeast infection in her, and then they will surgically replace the central line. Tonight she will be started on a drug called Amphotericin (also called Ableset), to combat the yeast. Lyrissa was treated with this anti-fungal drug before, and developed "rigors" which caused her to shake. Knowing this, they will premedicate her and watch her carefully during the infusion.
It is certainly frustrating to have these delays and in her treatment, but we are told that complications such as this are seen often. On a brighter note, Lyrissa seemed to feel better toward the end of the day today and played a little in the playroom.
Monday, February 28, 2005 8:01 PM CST
We just learned this afternoon that Lyrissa is scheduled tomorrow to have a bone marrow aspiration. She will be sedated and they will take some marrow from each hip. This is apparently part of the protocol at this stage (between the second and third rounds of chemo). Normally, however, they would have done this during the procedure to insert the straight catheter into her chest to prepare for her stem cell collection.
Since her stem cell collection is now going to be between the third and the fourth rounds, the treatment protocol still requires a bone marrow aspiration before the third round. She will most likely go home later tomorrow afternoon, and then return for her admisson the following day (3/2) to begin her third round of chemo.
When Lyrissa was first diagnosed, they had done surgery to biopsy the tumor, insert her central line, and take bone marrow from each hip. The bone marrow did not show any disease at that time. Let's hope and pray that that hasn't changed! Thanks everybody.
Friday, February 25, 2005 8:05 PM CST
Lyrissa is still doing well at home. Her CAT scan from Monday did show a decrease in the tumor, so that was good news. Today she underwent a bone scan and more lab work.
Lyrissa's counts have risen rapidly, in fact, too rapidly for the stem cell collection to be done at this point. Now they are aiming to do the stem cell collection after the third round of chemo which is scheduled for March 2nd. The idea is to get the cells as they are rising, so they are "fresh." Once they have gotten to a certain point, I guess they have been "hanging around" too long.
They have said that this is no problem, and that sometimes this happens. The fact that Lyrissa was given the wrong dosage of her GCSF shot last week may have contributed. Either way, it is apparently not a problem to do the stem cell collection next time around. It will just probably be a spur-of-the-moment decision, and they plan to monitor her counts daily instead of every other day, to catch the cells at just the right time.
Lyrissa is still in good spirits, and we thank God for Lyrissa's lack of mouth sores and fevers this time around. What a blessing! PLEASE CHECK OUT THE TWO NEW PHOTOS OF LYRISSA TAKEN JUST BEFORE HER SECOND ROUND BEGAN. Thanks again for all the wonderful guestbook entries. Margi
Tuesday, February 22, 2005 6:10 PM CST
Today Lyrissa underwent a cat scan of her chest, abdomen, and (either head or pelvis - I can't remember!). Please, please pray that the tumor has shrunk. We know that it did indeed shrink after the first round, and with hope, has decreased in size even more.
Lyrissa was sedated for the test in order to keep her still, so she experienced some irritibility today, but by tomorrow should be fine. Tomorrow a visiting nurse will draw labs at home to monitor her counts, and then Friday, she has a bone scan at A.I. (outpatient) and more labs there.
Again, her bone marrow/stem cell collection is still set for early next week, possibly Monday 2/28. Third round of chemo is approximately March 2nd.
This upcoming third round of chemo, as well as the fifth round, involves different drugs than the first, second, fouth, and sixth rounds. Also, I think the drugs are administered over a five-day period, rather than three.
Monday, February 21, 2005 4:44 PM CST
Lyrissa had an echocardiagram and an EKG today. After that, they checked her blood and determined that she was in need of platelets. So she stayed in the outpatient oncology clinic for about an hour while she received her transfusion.
Her blood counts also confirmed that right now she is neutrapenic (zero white counts) which means she is very prone to infection. This is normal, however, and with her daily shots of GCSF, her counts should soon begin to recover. Please pray that Lyrissa remains fever-free so that she does not have to be admitted. The doctor who does the stem-cell aspect of Lyrissa's treatment will now watch her counts very closely, because the upcoming stem-cell collection will need to be performed at just the right time to get a good collection.
Lyrissa has two more tests scheduled for this week - a CAT scan tomorrow and a bone scan for Thursday. She will need to be sedated for both to ensure she remains still. Because she is vulnerable to infection now, she must wear a mask throughout the hospital, and this is especially important this time of year, when there are lots of sick children hospitalized.
Despite her low counts, she is just as cheerful and upbeat as ever!
Please continue to pray that Lyrissa stays strong and free of infection. Thank you to everyone!
Saturday, February 19, 2005 8:19 PM CST
Lyrissa is still doing well at home. So far no fever, no mouth sores! Her mom and dad had a big scare when, (to make a long story short) the insurance company mail order prescription service mailed the wrong dosage of her daily Nupagin (GCSF) shots in pre-filled syringes. (They were supposed to have sent vials, so the parents could draw up the correct amount.)
Instead of being given 75 micrograms, Lyrissa was given a shot containing 300 micrograms. Needless to say, her mom and dad were very worried. The doctor assurred them that Lyrissa would be okay, but that her white counts would just be "off." (These shots are given daily, post-chemo, to boost her white counts.)
Anyway, everything is fine now, and the insurance company delivered the correct amount of medication today. She is scheduled for an EKG on Monday, 2/21.
Thursday, February 17, 2005 5:19 PM CST
Lyrissa has been home since Tuesday, 2/15. She is doing well so far, with minimal vomiting, and no mouth sores yet. Her counts should begin to drop in the next few days. Lyrissa is given daily shots in her leg at home called Neupagin (or GCSF) which help to boost her counts. This is one of the hardest things for her mom and dad because the shots are given by them, not a nurse or anything.
Lyrissa is also still on TPN (intravenous feeding) for 14 hours at night. This helps to goive her optimal nutrition while she undergoes chemo. She has several different tests scheduled for next week to look at her heart, lungs, and of course, the tumor. Her bone marrow harvest is now scheduled for 2/28, with her third round of chemo to begin on 3/2. Of course these are all estimates, based on her counts.
For now, she is enjoying playing at home, coloring, "cooking" in her play kitchen, and reading her books. Thanks for everyone's kindness.
Sunday, February 13, 2005 4:35 PM CST
Lyrissa's second round of chemo ended last nite about 10 p.m. She has had several bouts of vomiting, and if mouth sores are going to develop, they should be present in the next several days to a week. She is still able to play and maintain her spirits in between getting sick.
Lyrissa is scheduled to have her bone marrow "harvest" (collection) on February 25. That will entail a short procedure to insert a straight catheter under her chest (similar to the central line she has now, but thicker. It is removed at bedside immediately following the procedure.) The insertion will be under some anesthesia, and then she will be taken to her room, where the collection will begin. It is a process similar to giving blood, and takes about five hours. A machine rapidly collects Lyrissa's blood, and somehow separates the stem cells, which are being collected to be transplanted into Lyrissa at the transplant stage.
After the inital six rounds of chemo, and surgery to remove the tumor, Lyrissa will be given extrememly high doses of chemo which will completely wipe out her whole system. Her own stem cells will then be put back into her body. The idea is to completely remove any traces of the neuroblastoma cells. (Radiation is also done in the months following the transplant.)
Lyrissa may leave the hospital tomorrow, it just depends upon the doctors' advice regarding her side effects. If she suffers as much as she did the first round, it is better to be in the hospital where she can have round-the-clock nursing care, intravenous pain medication, etc. If she goes home tomorrow, she may end up back within several days anyway.
Despite the stem-cell collection scheduled for 2/25, her third round of chemo is still slated for 21 days following the beginning of the second (which was 2/9). So February will be a busy month for Lyrissa! Luckily, Lyrissa's mom decorated her hospital crib with lots of balloons and hearts for Valentine's Day, and Lyrissa is as sweet as ever!
Thursday, February 10, 2005 6:37 PM CST
Lyrissa's return to the hospital went much better than her initial visit in early January. She has much less fear of her surroundings, and is familiar with doctors, nurses, and procedures like blood pressure checks and temperature taking. Her chemo began last night around 10:00, and will end about that same time on Saturday night. If her experience is similar to the first round, her side effects will begin at about a day or two later. Hopefully, she tolerates this round better.
She is being given medications now based on some of her past reactions, so maybe her side effects will be a little more tolerable. Unfortunately, probably the worst side effect she had before were the mouth sores, and there is very little that can be done to prevent or treat them. They were so painful for her! The doctors and nurses are going to try a mouth solution that is supposed to minimize the mouth sores to some degree, but unfortunately at this time, there is no perfect treatment for mouth sores. But it is also quite possible that Lyrissa may not get mouth sores this time. Lyrissa is thinking positive!
Tuesday, February 8, 2005 4:56 PM CST
Lyrissa is doing very well at home. She is playing and singing and happy to be home. Tomorrow she goes back in for round #2 of chemo and also for the stem cell harvesting.
Sunday, February 6, 2005 3:20 PM CST
Lyrissa is home now. My mom is up there too so Margy is getting some much needed help. I've only spoken to her once since they have been home and that was right when they got in. The nurse was there and so were some visitors so she couldn't talk. Speaking of visitors, if you would like to visit, please do not bring any children. Even though Lyrissa's counts are up, her immune system is still weak from the effects of the chemo. If she is exposed to a child who is ill, even one who may be symptom-free at the time, Lyrissa has a greater chance of contracting the illness. The doctors have told Margy and Greg that ANY time Lyrissa gets a fever she has to go to the ER. Thank you so much for understanding and thanks again for all your thoughts and prayers, visits, meals, cards and gifts. I will be up there in a few weeks and hopefully I will get the chance to meet some of you!
Thursday, February 3, 2005 7:53 PM CST
Lyrissa has been doing really well the last several days. She has been up and playing and taking lots of wagon rides. She is much happier! Lyrissa is scheduled to go home tomorrow, (Friday), and return on Wednesday, 2/9 for her second round of chemo. Lyrissa will be going home with TPN (the intravenous feeding) because her appetite is still not there. Other than that, she has been doing great!
At some point after this upcoming round of chemo, (before the 21 day interval elapses) Lyrissa's stem cells will be harvested, in preparation for her transplant down the road. This procedure involves inserting another type of catheter into her chest to collect the cells. The transplant doctor will be explaining all this tomorrow before Lyrissa goes home so we will have more information then.
Monday, January 31, 2005 7:17 PM CST
Lyrissa is doing much better! Her counts went way up today and the doctors have decided to stop the Amphotericin (fungal drug.) She is fever-free right now, and several of her medications have been discontinued or reduced to an "as needed" basis only. She is much more comfortable now. Lyrissa is still being fed intravenously and will probably need that for a while. She has eaten a few bites of things here and there, and hopefully will soon regain her appetite.
The doctors are hopeful that Lyrissa will get a brief stay at home, maybe this weekend, and then start her second round of chemo early next week. For now, it's one day at a time!
Sunday, January 30, 2005 9:38 PM CST
On Friday evening, Lyrissa began a medication called Amphotericin which is given to treat fungal infections which may "hide" deep inside the body. This was done because her counts were not improving and her fevers had continued (although the frequency of her fevers was decreasing.) The Amphotericin can be a risky drug and so Lyrissa's vital signs were monitored regularly during the infusion of the medicine. Lyrissa did develop one common side effect called "rigors" in which her body shook, like she had the chills. She was then treated with Demerol which counteracts those effects, and with the next day's dosage of Amphotericin, was pre-medicated to eliminate the shaking. Aside from some vomiting Saturday and Sunday morning, Lyrissa is doing much better.
Sunday was a very good day for Lyrissa, and the first ray of sunshine in a long time. Her counts had very slowly crept up, and she did not have fevers. She was able to leave her crib and play in a chair and even walk a little bit with some help. Her mouth sores have greatly improved and she drank a little and ate some dry cereal. She was smiling and playing happily, just like her old self!
Her counts should continue to increase, and if she is doing okay in other areas (vomiting, etc.), she might get a brief break at home before her next round of chemo is due to start. The doctors like to stick to the 21-day regimen as closely as possible, but it is not set in stone, so she may have a chance to get home for several days. Lyrissa is staying strong!
Thursday, January 27, 2005 8:22 PM CST
Lyrissa had a CAT scan today which did not show the presence of any type of fungal infection. She was sedated and woke up kind of fussy, but overall did not have a bad day. She is still experiencing fevers, but they seem to have decreased somewhat. Her mouth is still very, very sore but her pain medication is helping her to cope. She even still manages a smile now and then! Once Lyrissa's counts begin to recover, her mouth/throat sores (unpleasant side effect of chemo) will resolve itself. The next round of chemo should be a little less hard on Lyrissa.
Because Lyrissa has zero white blood cells at this time (which fight off infection), lots of precautions have to be taken. She is now in a room with a different air flow and she cannot leave the room (unless it is to go for a test, and even then must wear a mask.) Her visitors have to be limited, and anyone who is sick or who has been exposed to illness is asked to wait to visit until her counts are up. The family thanks everyone for their understanding and support.
Wednesday, January 26, 2005 7:09 PM CST
Lyrissa is still struggling with fevers and her counts are not recovering yet. The doctors say this is not out of the ordinary, but just to be sure that there is no other hidden infection, she will undergo a CAT scan tomorrow to look in different places. Although she is being treated with antibiotics, there may be some sort of fungal infection going on, in which case the doctors would use another medication to treat her. Other than that, Lyrissa is still just as pleasant as ever, despite all the discomfort she is experiencing. Hopefully, Lyrissa will start feeling better in the next few days.
Tuesday, January 25, 2005 7:34 PM CST
Lyrissa's mouth sores are still very painful and her fever has been up today. Some of her antibiotics have been switched to try and address possible infections. She is on pain and anti-naseua medications which have her very drowsy throughout the day. Still, she manages to ask for her drum, and still shows some interest in the play doctor's kit the hospital loaned her. Her counts are still low, but hopefully will start improving soon.
Monday, January 24, 2005 7:05 PM CST
Lyrissa is still in a lot of pain from the mouth sores, which can also be in the throat and the GI tract. She is receiving pain medication to keep her comfortable. Today Lyrissa also struggled with fevers, but this is also expected as part of chemo. She recevied a platelet transfusion today, which will help her to feel better. Once her counts gradually begin to rise, she should start to feel a lot better. Apparently, this first round of chemo is the roughest, but Lyrissa is staying strong.
Sunday, January 23, 2005 7:38 PM CST
Lyrissa is still struggling with some vomiting, particularly in the morning. This morning her blood pressure and heart rate were back up. Her medications were adjusted again, and she slept for a lot of the day. She is also beginning to get the mouth sores, common with chemotherapy, but reportedly very painful. It is very hard for her parents to watch Lyrissa in discomfort. Hopefully, this week will be a little bit better.
Saturday, January 22, 2005 9:13 PM CST
Not much has changed since yesterday. Lyrissa continues to have problems vomiting, and if it doesn't stop she may have to have a nasogastric tube put in (a tube that goes in her nose and down to her stomach). The doctors switched her meds around a bit and put her on some pain medicine which allowed her to get some sleep and stop being so agitated. Today there was a big snowstorm in Delaware so Margy didn't have any visitors. The nurses made a big snuggle nest with blankets and pillows so Margy and Lyrissa could take a nap together! The nurses and doctors are so great at A.I.
Margy spent some of the day learning about TPN (intravenous nutrition). Lyrissa is still not eating anything. The next round of chemo is set for Feb 1st and the doctors say she might have to remain in the hospital until then. Lyrissa's counts still aren't up to a good level, and she had another blood transfusion today.
Friday, January 21, 2005 6:58 PM CST
Lyrissa's counts have been dropping which is expected. She is still struggling with vomiting. Doctors are adjusting her meds to get that under control. She is being fed via TPN (intravenous feeding), and they are training Margy and Greg on the at-home care of her feeding, (in case she goes home with the TPN). Right now, there is no projected time frame for going home. They have to get the vomiting and nausea under control, as well as complete the TPN training before that can occur. An occupational and physical therapist are working with Lyrissa to maintain her physical strength and her learning skills. The family is so grateful for everyone's kind words and prayers for Lyrissa.
Thursday, January 20, 2005 3:55 PM CST
Today has been a long day for Lyrissa. She continues to vomit and has not been eating anything. Previously, the nurses were medicating her for nausea AFTER she would get sick, but now there is an order for around-the-clock nausea medication so hopefully that will help prevent the vomiting.
Because Lyrissa has been in bed for so long, she has lost a lot of weight and muscle tone. She hasn't walked since she has been at A.I. and so now she is going to receive physical therapy.
So far we have no idea when she will be able to go home.
Tuesday, January 18, 2005 9:42 PM CST
Lyrissa had her MRI and CAT scan today and the resident doctor told Margy that both tests showed no tumors. Margy is going to talk to the head of the team tomorrow to find out what that means, but for now I will consider that excellent news. It still keeps the neuroblastoma at a stage IV simply because of the complex genetic make-up of Lyrissa's tumor and the high risk of re-occurance. Lyrissa had not been eating well so she is now receiving TPN (I.V. nutrition). Apparently she ate well at dinner, but Margy and Greg are still going to be trained on home TPN in case Lyrissa needs the supplemental feeding at home. Because of the training, we have no idea when they will all get to go home.
If anyone has any digital photos of Lyrissa, please email me some so I can post them on this website. My email address is cmwoodrn@hotmail.com.
Thanks again, everyone.
Tuesday, January 18, 2005 4:46 PM CST
For those of you who have never seen Lyrissa, I have posted a photo of her on the website. Just click on "view photos." She came to visit us here in Alabama in August and this photo was taken after her bath. She was sitting on my couch looking cute! I will post more photos as I get them.
Tuesday, January 18, 2005 6:27 AM CST
Lyrissa's chemo ended this morning at 3 a.m. All in all I think she tolerated it okay. It caused a major diaper rash and some nausea and vomiting. Today she is having a repeat MRI because she woke up in the middle of the last one. Also she will have a CAT scan of her brain since the doctors thought she had a lesion on her ear. My sister is supposed to call me tonight so I will post the results as soon as I get them.
Saturday, January 15, 2005 1:00 PM CST
Lyrissa began chemo this morning at 3 a.m. It will run continually for 72 hours, and if there are no complications, she may go home after it is completed. So far she is doing ok with the chemo. No vomiting or diarrhea. My mom said she is just a bit cranky. Margy is giving her a bath today. The MRI didn't go well because Lyrissa woke up in the middle of it, so I have no results to report. Thanks to everyone for all the cards, thoughts, prayers, and gifts that you have sent the family. Feel free to sign the guest book as often as you like. It's a great source of support for Margy and Greg.
Wednesday, January 12, 2005 8:38 PM CST
Hi everyone. Today Margy and Greg had a family meeting with all the doctors and they found out the official results of all the test. First of all, the tumor is definitely a neuroblastoma. The doctors categorized it as between a stage III and stage IV, Unfavorable Histology, and High Risk. The Unfavorable Histology means that the cell structure of the tumor is extremely complex. The High Risk part means she is at high risk for the cancer to come back after she goes into remission. On a better note, there is no evidence of the cancer in both the bone marrow or any other organs. However, the bone scan did show spots on her ear, thigh and tail bone. Because a bone scan can sometimes give false positive results, Lyrissa will have an MRI tomorrow to see if the results of the bone scan were accurate. Meanwhile, chemotherapy is expected to begin on Friday. I am not sure how many days it will last, maybe 4 to 5. Then she will go home and wait 21 days and then come back for another round of chemo. That's the way it will go for 12-18 months; chemo every 21 days. At some point she will get radiation and a stem cell transplant using her own harvested stem cells. Margy told me that Lyrissa's course of therapy is actually a trial study. In this study the doctors are looking to see if one type of stem cell transplant is more favorable in preventing re-occurance than the stem cell transplant typically used in neuroblastoma treatment. Something about purged vs unpurged stem cells. Lyrissa will be randomly assigned to receive either the purged or unpurged cells. Anyway, in the beginning her chemo will be more aggressive than usual as part of this study. Somewhere along the way Lyrissa will also have surgery to remove the tumor once the chemo has shrunk it enough.
Wow, that was alot to read and take in. Lyrissa will have her nails trimmed tomorrow and her hair cut. The doctors said she will lose her hair pretty soon into the treatment and by cutting it before chemo, it will prevent hair from geting all over the place (in her food, bed, eyes etc).
Margy said Lyrissa loves to wear hats, so for those of you wanting to do something and feeling helpless (like me) maybe we can all buy Lyrissa a cool hat and send it to her.
I will post tomorrow when I hear the final results of the MRI. Please continue to pray for Lyrissa. This is a very aggressive cancer and it will be a rough year ahead. Thanks.
Tuesday, January 11, 2005 1:54 PM CST
Hi everyone! My name is Claire Wood and I am Lyrissa's aunt. I will maintain her website until her mommy and daddy can take over when things have settled down. Lyrissa's story began on January 5, 2005 when she was 21 months old. She had been having flu-like symptoms for a few weeks and then her parents noticed that the right side of her abdomen was hard. They took her that day to her pediatrician and by 2pm she was at A.I. Dupont Children's Hospital having an ultrasound. At first it looked like a malignant tumor on her liver, but then after Lyrissa had a CAT scan, the doctors said the tumor was, in fact, on her kidney. It was decided that she would have surgery the next morning to remove the tumor and the kidney. Unfortunately, before surgery the doctors realized the tumor was wrapped around blood vessels and they would be unable to remove it at that time. Instead they took a biopsy of the tumor, took some bone marrow from each hip to test for metastasis, and inserted a central line for chemotherapy. Yesterday, Lyrissa had a bone scan and it showed possible spots on her thigh and her tail bone. So far, the bone marrow looks good. Today she is having a nuclear medicine test (mIGB) where she is injected with dye and if the dye goes right to the tumor, then the diagnosis of neuroblastoma is certain. So, that's where we are right now. Tomorrow we should know EVERYTHING : the official results of the bone marrow test, the biopsy results, the bone scan results and the nuclear medicine test results. They will tell us what stage she is at that time and chemotherapy will begin immediately. I won't know much until tomorrow night so look for a posting on Thursday morning. Please pray for Lyrissa and please sign the guest book for Margy and Greg. Thanks.
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