Ongoing updates of the Relapse episode: This page is appended daily for the time being: check back often! Latest News is added as it arrives!
Hi everyone,
Ryan is feelilng well these days. He's even been spending mornings last week and this at school for the first time since mid-February.
The school year ends this Thursday and he has really enjoyed getting to be a part of things again. He's even been given the go ahead from his doctor in NY to participate in summer camp.
We had signed both he and Matthew up for a summer day camp at their school back before Ryan relapsed. We weren't sure he'd be able to go, but he can!! Yeah! Last week we started him on an appetite stimulant and he's been eating better. We hope to see a nice weight gain soon.
In our last update I mentioned his exposure to shingles at the clinic in NY. Turns out the incubation/isolation period is longer than we were first told. We were supposed to return next Tuesday (6/18) for his next treatment but that would be before his isolation period would be up.
Since we left there was another incident of shingles exposure at the clinic so there are dozens of kids affected. We and all the kids exposed are not be allowed to stay at the Ronald and require an isolation room for treatment - a logistical nightmare with sooo many kids involved.
We were asked to wait another week before returning so that his isolation period will have elapsed. So, we head back on 6/26 instead.
As we travel to NY to begin Ryan's next round of treatment, a very special event will be taking place in Washington, DC. From Cursearch.org:
Reach the Day: Conquer Childhood Cancer is our unifying call to the nation to fund the critical research necessary to cure children diagnosed with cancer.
It is a national day of awareness for pediatric cancer. "For the seventh year in a row, parents, patients, survivors and others touched by childhood cancer are invited to come to Washington, DC on June 25-26, 2007.
Continue the Gold Ribbon Days tradition and let members of Congress know that there is an urgent need for funding for childhood cancer. Scientific research must continue until we reach the day that every child diagnosed with cancer can be cured."
"At a time when breakthroughs can be made in treating all childhood cancer and the quality of life for children with cancer improved, the cutbacks in government funding will endanger the development of new clinical trials and threaten progress in curing childhood cancer. "
On Thursday March 15, 2007, the Conquer Childhood Cancer Act of 2007 was introduced in Congress. "This legislation will provide critical resources for the treatment, prevention and cure of childhood cancer. The Conquer Childhood Cancer Act brings hope to the more than 12,500 children who are diagnosed with cancer each year. Over 40,000 children and adolescents currently are being treated for childhood cancers."
"The Conquer Childhood Cancer Act of 2007 is a landmark piece of legislation which authorizes $150 million over a five-year period to expand support for biomedical research programs of the existing National Cancer Institute-designated multi-center national infrastructure for pediatric cancer research, establish a population-based national childhood cancer registry, enable researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments, and provide funding for informational and educational services to families coping with a diagnosis of childhood cancer."
If you haven't already, please
VISIT curesearch.org
and click on "Write a Letter". This will easily walk you through writing a letter to your senators/congressmen urging their support of the Conquor Childhood Cancer Act. You can use their form letter as is or use portions of it and personalize as you wish. It only takes a few minutes.
So many people ask us "What can we do to help?" You can do this.
Thank-you.
Love,
Norma and Paul
June-2-07
Hi everyone,
Well, it's been a long week here in NY. We arrived at the clinic bright and early Tuesday morning (since no one had given us a specific time to be there). We expected the usual labs, exam, etc. and then to be admitted for his treatment. I head to the desk to register and am told "He's not in the computer, what are you here for?" HUH?!?!?!?!? N-n-n-not in the computer? W-w-w-what??? So we sit and wait while they check on things. And wait....and wait.....and wait. A second inquiry, a third. Nothing. Then around NOON we're told we didn't need to be there until 4:00 o'clock or so for the inpatient admission. NOW you tell us?? Okay, deeeep, cleansing breath. Paul and Matthew had already left to return home so Ryan and I headed to Central Park to kill FOUR HOURS. We get back at 4 p.m. and are told his bed isn't ready yet. So we wait.....and wait.....and wait. His bed is f inally ready at 7:30 p.m. Deeeeep, cleansing breath.
Wednesday we gear up for his treatment. We're told it will happen around 2 p.m. So we wait some more. Then we're told there's a delay. The infusion will happen around 4:30. Okay. We wait. The nurse practitioner comes in to access his Ommaya but just makes a quick call to the doctor to let her know she's getting started. When she comes back into the room she tells us it's not happening today. You see the 3F8 antibody is produced here at Sloan but the isotope it's being combined with comes from another lab supposedly in Canada. She proceeds to tell me that it went to the wrong hospital. HUH?!?!?!?!?! Then I hear they don't know where it is. DHL is "tracking" it. HUH?!?!?!?!?!? Soooo, let me see if I have this straight. A radioactive isotope is missing and/or somewhere that it shouldn't be. "Hello, Homeland Security?..........."
Deeeep, cleansing breath. Going to my Happy Place now.
So, we spend another night in the hospital for no reason. And wait.
Finally, on Thursday everything falls into place and he gets his infusion. Hallelujah! The infusion itself went fine and was uneventful. However, even though he was pre-meded with anti-nausea and pain meds, he still had a very bad reaction and proceeded to spend the next 14 hours vomiting. He also had more pain than most kids experience. I'm told that he's the rare exception to have had this hard a time with it. Great! So the poor kid was with either puking because of the treatment or unconscious from all the medications. All this time they're also doing several blood draws and draws of cerebral spinal fluid from his Ommaya. Some pain lingered into Friday but not that much. He slept most of Friday only finally waking up around 5 p.m. Thankfully, he was feeling much better. He managed to nibble on some food that evening, which is good since he lost another 2 pounds. ; However his doctor wasn't comfortable releasing him just yet so we spent another lovely night at Chez Sloan. Fully expecting to be released today (Sat.) we were surprised when the docs came around and said they wanted to keep us another day. One of the reactions he had after the infusion was a fever. It could just be a reaction to the 3F8 or it could be something bacterial going on. They sent off cultures on Friday of his cerebral spinal fluid and we have to wait 48 hours to see if anything grows. If everything is negative, we should be heading home on Sunday.
Oh yeah. The other fun thing. Thursday afternoon the doctor comes into the room with asks me if we were in the clinic on Tuesday between such n such a time. Umm, we were in the clinic pretty much the whole day, including the specified timeframe. Turns out there was a kid in the clinic that day with shingles, a chicken-pox related virus. Needless to say that sends a pediatric oncology clinic into quite a tizzy and frantically tracking any patient who may have come into contact with this child, Ryan among them. The chicken pox virus can be fatal to an immune suppressed child. So, as a preventive measure, Ryan (and all the other patients exposed) gets an IV dose of some sort of immuno globulan (sp?) stuff that is supposed to prevent him from contracting the virus plus goes home on an oral medication. He and all the other kids in question are banned from the clinic and Ronald McDonald House for the duration of the incubation period - either 2 or 3 weeks - I forget. Fortunately for us we're heading home anyway and won't be back until the incubation period has expired. However, it's quite an ordeal for RMDH families who have nowhere else to go.
Okay, enough grousing. The important thing is that the treatment happened. We're moving forward. The next round may or may not be as bad. It's hard to predict but they're adjusting his pre-meds for next time to hopefully stay ahead of any side effects.
One lingering concern though is that his liver enzymes are still elevated. This could potentially delay the chemo they want to do after his second intrathecal 3F8 treatment in a few weeks.
PLEASE PRAY that these enzymes come down before then. We really want to make sure we address the rest of his body with chemo to prevent a relapse elsewhere.
PLEASE PRAY that the next round goes more smoothly, both logistically and for Ryan's comfort.
So, right now, all things considered, we're in a good place. Ryan is NED, his treatments are proceeding and our trips to NY should be short, albeit frequent ones throughout the summer. As we look around at other familes we know, we can say we're lucky. Many are fighting an uphill battle to rid their child of cancer, others are quickly running out of options. And, as has happened all to often lately, we've said good-bye to another NB warrior we know. Marielle Nish passed away a few days ago. I believe she was 8 yrs. old. We met her family last year. Matthew became fast friends with one of her brothers. This family has incredible strength and faith. Please say a prayer for them. I've heard of roughly 6 others in the past month or so. Yes, we're lucky, in that bizarre, "everything's relative" sort of way.
Thank-you for all your prayers for Ryan and for all our courageous NB kids.
Love,
Norma and Paul 5-23-07
Greetings from the Big Apple!
We’re back in NY for Ryan’s next phase of treatment BUT first things first.
HAPPY BIRTHDAY TO RYAN!!
He turned 8 on Sunday the 20th. Since we had to be on the road to NY on Sunday, we had a small party for him on Saturday night with just the 4 of us along with his buddy Duncan and his mom. When we return, we’ll have a proper blow-out party for him. I’m trying not to think about the fact that he’s spent nearly half his life in treatment.
Other big news – huge really - ALL his tests are in finally (including bone marrows and urine markers) and Ryan officially shows No Evidence of Disease!!!!!!!!!!!!!!!!!!!!!!!!!!
He has wrestled the beast to the ground AGAIN! The Amazing Super Ryan triumphs AGAIN! Thank-you God!! Thank-you to everyone who has prayed and prayed for him.
Ohhhh, if only that could be the end of it and we could go home and live a normal life…… whatever that is, I really don’t remember. However, treatment will continue because NB cells could still be lurking somewhere and we need to hit it with every piece of artillery we have.
That artillery now consists of the intrathecal (injected into the fluid surrounding the brain and spinal cord [cerebrospinal fluid]) antibodies.
When we left NY a week ago Friday, we were told that he may not get the 8H9 antibody at all. Those pesky liver enzymes were still too high. We spent the week in limbo not knowing what he’d get.
After having labs drawn twice while we were home, we were told that even though they have come down, they’re still not low enough.
Labs drawn Mon. and today here in NY showed once again that they are still too high. So that means he will get the intrathecal 3F8 instead. It seems the 8H9 is absorbed by the liver much more than the 3F8 so they’re concerned that if they start it, they might have to stop it in the middle because of liver issues.
We were pretty disappointed at first. We hear so much about the 8H9 and its perfect track record. However, since he’s gotten the 3F8 systemically all along and we KNOW his body responds to it (it was what finally cleared his disease in 2005), we feel good that it will work just as well as the 8H9.
The doctors feel very confident about this too. We asked about the possibility of waiting a bit to see if his enzymes come down more, but they don’t want to do that since it’s been 2 months since he’s received any treatment
. Why wait and give the beast a chance to rear up again? There’s actually a possibility that if his enzymes come down later on, that they can switch over to the 8H9.
So yesterday he had his “flow study” done that I mentioned in the last update where they inject an isotope through his Ommaya reservoir in his head.
They then do a series of 3 scans to make sure it’s going where it should. One right away, one 4 hours later and one 24 hours later.
Next Tuesday he’ll be admitted to have the therapy dose given. It should only be an overnighter. They don’t need to do the "test dose" like they would for the 8H9 since this is a Phase II study and they already have the desired dose down pat.
The 3F8 can have side effects such as headache and nausea but it should pass fairly quickly and he will be pre-meded for it.
Just as with the 8H9, the 3F8 will have a radioactive isotope attached to it. They will do tests over the rest of the week and then we’re free to go home for a bit. He will get I believe 4 rounds of this with anywhere from 2-4 week breaks inbetween. We will hopefully have a more concrete schedule for the summer by the end of next week.
Ryan may also do some lower dose chemo during these breaks. This is because this intrathecal therapy is ONYLY treating his Central Nervous System.
There’s always the possibility that he could relapse in another part of his body and they don’t want to ignore that. As I said, it’s already been 2 months since he’s had any systemic treatment so they want to cover all bases. Fine with us!
Ryan is feeling good for the most part. His appetite has been TERRIBLE though and he has lost more weight. 2.2 pounds in just the week were were home. He’s down about 7 or so pounds from his pre-relapse weight.
He’s looking quite boney and it freaks me out. His strength is down as well. In all the treatments he’s had over the last 3+ years, he’s never had weight/appetite/eating issues. The good news is that since we’ve been back in NY he has actually been eating more.
We went to his favorite pizza place, Delizia, after we arrived Sunday and he ate almost a whole slice of pizza, a fair amount of Dad’s salad and then topped it off with 2 mini cannolis.
That was a more than he’d eaten cummulatively in weeks! Monday we had lunch and dinner at Delizia and he’s still eating well.
The docs didn’t seem overly concerned about the weight saying it will come back – don’t worry. Yeah, right. Easy for them to say! “Worry” is my middle name!!
Sorry this was such a long update. We were waiting for all this info and only really got the definitive word today.
I’ll update again next week after he starts the treatment
.
As always, thank you for your prayers for Ryan. While we were disappointed at first that he wasn’t getting the 8H9, we’re trusting that God has put us on this path because this is the correct treatment for Ryan.
Please keep all our NB warriors in your prayers as well as the family of Penelope London. Penelope became an angel this past Saturday after an incredibly brave battle with an incredibly cruel disease.
Love,
Norma and Ryan
Hi,
Ryan had his work-up done last week consisting of brain MRI, spine MRI, CT of chest, abdomen, pelvis, MIBG scan of his whole body, and bone marrow biopsies.
We came home on Saturday. I've been waiting until all test results were in before doing an update, but I'm being besieged with inquiries so here's what we know so far.
Brain MRI is clean!!!! CT is clean!!! WOOOOO-HOOOOO!!!! We still await word on the other tests. I hope to be sending another quick update soon when he's officially declared NED once again.
Now heaven forbid that we just be allowed to enjoy this good news without also being given something else to be anxious about. Ryan is scheduled to continue with the next phase of this protocol starting on 5/21.
One fly in the ointment is that his liver enzymes are elevated and they HAVE to come down to a normal range in order for him to start on the 21st.
This elevation is most likely due to the effects of the chemo he had and should, hopefully, be resolving. However, we have to have labs done a couple of times this week while we're home to see if they're doing just that. If not, we will be delayed. Delays always make us nervous.
So, as I thank you all for your prayers for his good scan results, I now ask you to add prayers for these liver enzymes to return to normal - SOON!
A little synopsis of what this next phase will entail.
We will need to be in NY for 3 weeks. Week one Ryan will have a "flow study" done to see if his Ommaya reservoir (the device they implanted under his scalp) is working properly and the "stuff" is going where it should in his brain and spine. I believe it's a lower "test dose" of the 8H9.
Week 2 he will have the treatment dose of the 8H9. 8H9 by the way is an antibody with a radioactive isotope attached to it.
Week 3 I'm pretty sure is just an observation week. Then we go home for 2 weeks. Then back again for another 3 weeks and we do the whole procedure over again.
Somewhere in between all this is more scans and tests. He will need to be inpatient for the 8H9 injections but they should only be over-nighters.
Side effects should be minimal. He will be pre-medicated much the same as for the other 3F8 antibodies he's gotten in the past. Some kids get headaches, nausea, diarrhea.
Should make for an interesting "How I Spent My Summer Vacation" essay next fall when he starts 3rd grade!
As always, thank-you for your prayers for Ryan and all our NB warriors. We have far too many friends battling relapse.
Love,
Norma and Paul
P.S.
A belated Happy Mother's Day to all the moms out there. If you were lucky enough to have all your children with you this Mother's Day (even if just by phone) please say a prayer of thanksgiving for your good fortune.
Also say a prayer of comfort for the mothers who are struggling to get thru each day - not just Mother's Day - with the unbearable loss of their child. And a prayer or two for strength for all cancer moms still in the fight.
Hi,
We leave for NY later this morning. To say we a nervous wreck is putting it mildly. First set of scans since relapse. GULP!
It's hard to believe we've been back on this roller coaster for over 2 months now. I was just reading Nick Franca's sight and his mom Caryn really took the words right out of my mouth describing what entering the world of relapse is like. She wrote: "I am having the hardest time it seems. I don't know how to do this part. I allowed myself to be blindsided once again. I started believing we truly had been put in the pile of patients that would stay in remission. I need to talk to some moms who have been here and are functioning with all that starting treatment again brings. I need to know how to regain strength and hope and optimism, framed in a different picture now."
We too allowed ourselves to be blindsided, to convince ourselves we were the "lucky" ones. I wish my 2 months of experience could help you Caryn, but to say we're "functioning" is a stretch.
The results of these scans will determine how Ryan's treatment will continue. Broken record - PLEASE PRAY FOR CLEAR SCANS AND BONE MARROWS.
We'll update as soon as we know something. If I haven't had a nervous breakdown by then.
Love,
Norma and Paul
P.S.
Ryan had his First Holy Communion on Sunday. I wish I could say it was great day but unfortunately, Ryan threw up after returning to his pew. I know some of you are laughing right now, but he was mortified. He wasn't sick exactly, just nervous I think. He did look handsome in his suit though. I only got one picture of him before we left for the church. I just wanted him to have a great day of being the center of attention without it having anything to do with cancer. Oh, well.
Hi all,
Ryan was released from the hospital last night. His fevers are gone, nothing grew out of any cultures, his low blood pressure issue seems to have resolved as well. His blood counts seem to be on the rise again too which is great.
The only nagging problem is his appetite which is non-existent. If we can't get him eating soon, the next step would be an NG tube for tube feedings. DO NOT want to go that route. Neither does he so he's trying.
Any suggestions on how to pack a lot of calories/nutrition into a small amount of food are gratefully accepted! We're hoping he feels up to playing in his LIttle League game tomorrow afternoon.
On a happy note, Ryan will be able to receive his First Communion with his class this Sunday. We were never sure if he'd be in NY or in the hospital here, but all systems are "go"!
A big thank-you to Miss Julie who took in his waaaay too loose trousers for him so he can wear his suit. And also a bit thank-you to his entire CCD class and teachers you have been so wonderful to him - and us!
Ryan's work-up (scans, bone marrows) has been rescheduled for next week in NY. We will leave on Wednesday and then have a jam-packed Thursday and Friday. His counts will dictate, but there's a fair chance we'll stay on for his next phase of treatment. Please pray these scans bring good news.
In my last update I mentioned being disappointed that since we weren't going to NY this week, I wouldn't get to see a few of the moms I've become friends with there. One of these friends is Caryn. Her son Nick is a SUPER RARE teenage diagnosis. He's 17 now. In April they celebrated 1 year of No Evidence of Disease.
Yesterday they learned that Nick relapsed.
Nick is an amazing young man and his mom one of the kindest, most caring, insightful souls I know. She often reaches out to other parents in despair with words of encouragement and hope. If you ever took the time to read back on her journal updates, you'll see what I mean.
If you feel so inclined, please take a moment to sign their
guestbook .
I know from experience that these words of support - even from strangers - can get you through the most difficult days.
Thank-you for your prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
Hi all,
Just wanted to let you know that we did not leave for New York as planned today.
Last night Ryan deveoped a fever (102.5) and even though he was no longer neutropenic, they wanted us to come in for antibiotics anyway. Since he still has a port they worry about a line infection.
So while I busily completed packing, Paul drove Ryan into Boston Children's for what we thought would be a blast of antibiotics and then home. At around 2:30 a.m. he called to say they were being admitted. His blood counts had dropped just from earlier in the day when we were in Clinic getting a red blood cell transfusion. Also his BP was on the low side. I guess both of those things can indicate a blood infection.
Aside from being tired, he'd been fine all day at the clinic. We were still hoping for a quick early release in the morning to still be able to get to NY but that didn't happen. No doctors had come by since the middle of t he night and it was now noon. It wasn't until Paul threatened to take Ryan and leave for NY that someone miraculously found the time to talk to him. Hmm, where have I heard that before???
Then the doctor came in and said she was very concerned about putting Ryan in a car with this fever, low BP and low counts and possibility of a blood infection. No one had yet laid all that out to us. So, we're still here.
As far as I know nothing has grown out of any cultures yet. He's still getting fevers though and has vomitted twice yesterday and once tonight.
I've heard second-hand that NY will reschedule Ryan's work-up for next week. Neither his doctor here nor the one in NY (whom I both left call back messages with) has contacted us directly.
So, we're really disappointed not to be heading to NY and pretty concerned about what this possible infection might be. He's never had to have a line pulled before and I don't want to start now.
On a slightly selfish note, I was looking forward to seeing some of my buddy NB moms and kids who are in NY this week. Caryn, Leann, Kim - I'll catch ya another time.
Gotta run. The computer in our room isn't working so I had to duck out to the Resource Room to send this and I just heard that Ryan is looking for me.
Please pray that Ryan's fevers clear up, no cultures grow, and his counts and BP come back up.
Love,
Norma and Paul
Hi everyone,
Ryan had his stem cell infusion last week. All went smoothly. Even though I confirmed with the transplant doctor that Ryan's stem cells were NOT purged, I've stopped obesessing about it. It's done. Moving on.
We've been back into the clinic twice this week for platelets (Monday and Thursday) but they do seem to be inching upward. Yesterday they were 19 as opposed to 5 just before the stem cells.
His hermaticrit is still hovering on the line but we'll wait till next Monday to see if he also needs red cells or if they'll hopefully be inching upward too. White count is also slowwwwly coming up but is still low enough that when he developed a fever Wednesday night we ended up in the ER at Children's for IV antibiotics. It was a very long night but at least he was not admitted. Y-A-W-W-W-W-N!
We got an unexpected phone call yesterday from Dr. Kramer's office at Sloan with our schedule for next week.
HUH?? Next week??? Umm, okay.
So on Tuesday we'll head down to the Big Apple for Ryan's first set of scans and bone marrows since his relapse. Now "scan week" is always stressful for any family, but this is easily the scariest one yet for us. We're already hyperventilating.
New to the list - now and forever I assume since his relapse was in the brain - are MRI's of his head and spine. I may be stealing some of his anti-nausea meds next week! Breathe, breathe, breathe. There's a possibility that if his counts come up enough by the end of the week, we may just stay on and get going on the next phase of treatment.
On the "normal life" side of things, Ryan played his first Little League game of the season last weekend. He enjoyed it but did get a bit tired and sat out the 3rd (last) inning.
It was great to see him out there though. We are drinking in and savoring every moment of ordinary kid stuff we can.
Tomorrow is the official Opening Day ceremonies with a parade. As I mentioned before, Ryan has been asked to throw out the first pitch.
He, Matthew and Paul have been playing catch, batting, etc. in the backyard gearing up for the season. Hopefully, our stay in NY won't cause Ryan to miss too many games. The coaches have been so wonderful to him.
Matthew too is playing this year so we'll be spending LOTS of time at the ballfield. He's really grown a lot since last season and seems to have more strength and power.
Should be a fun season. He decided (with our help) to take a break from Karate until baseball is over. Just too much going on all at once.
Please pray that at the end of next week, we hear those beautiful words "No Evidence of Disease" once again. Also pray for calm nerves between now and then.
Grace Oughton
who is recovering from surgery and starting chemo again soon,
Emily Adamson, who recently relapsed for the 2nd time and is also recovering from surgery,
and , Penelope London who is nearing the end of her battle, is in pain, and needs prayers of comfort and peace.
Thank-you.
Love,
Norma and Paul
Hi everyone,
We were so hoping for a Monday Morning Miracle yesterday.
Ryan had labs drawn early by the VNA to see where his counts were at and I had pretty much decided that our prayers would be answered and the phone call would say they're great. No stem cells needed!
That'll teach me to get my hopes up - again.
His platelets were a dismal and pretty scary 5, the lowest they've EVER been. His ANC was in the gutter as well, with the hermaticrit (red cells) hovering on the borderline of needing a transfusion.
It being Patriot's Day, the Jimmy Fund was closed so we headed into Children's for a platelet transfusion.
Luckily, our route didn't put us in the way of the Boston Marathon and the rain delay for the Red Sox game worked in our favor too! We drive right by Fenway on the way to Children's.
Last Thursday when we were in Clinic for transfusions Ryan's doctor said it was pretty much guaranteed his counts would not recover without his stem cells and that they would probably do the infusion this week, barring the aforementioned and much hoped for miracle.
So, bright and early tomorrow we head into Children's again, get admitted to the transplant unit, tank up on platelets and red blood again, then the stem cell infusion which, if I remember correctly, has a hideous odor to it as it goes in. Something about the preservative they use I think. Anyway, they're required to keep him 24 hours so we should be home sometime late on Thursday.
It usually takes a good 7-10 days at least for the stem cells to kick in. The platelets need to be above 50 for us to be able to go to NY for the next phase of treatment.
We're VERY anxious to get back to NY and move forward with treatment there. Please pray that these stem cells are disease-free (yes, I know. we're just paranoid) and that they "do their thing" quickly and make happy, healthy blood cells.
Lastly, once again, please keep all our NB friends in your prayers.
Especially Grace Oughton
who is recovering from surgery and starting chemo again soon,
Emily Adamson, who recently relapsed for the 2nd time and is also recovering from surgery,
and , Penelope London who is nearing the end of her battle, is in pain, and needs prayers of comfort and peace.
And far too many more to list here.
There has been much too much sadness in the NB world lately.
Thank-you for all your prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
Hi everyone,
All in all, Ryan did fairly well with this last round of chemo. It ended Monday of last week and after the usual series of unnecessary delays, we were FINALLY released at 8:00 p.m. He had had no real side effects while we were in-patient but some vomiting and dierrhea started after we got home and continued thru the week.
Not nearly as bad as last time though and we were able to manage it without him getting dehydrated again.
This past weeked his appetite also kicked into high(er) gear so that was nice to see. He's still a bit on the lean side so we're tryng to fatten him up. The Easter Bunny helped with that.
While his counts have been low he hasn't been able to be around too many people but he did join in an Easter Egg hunt at a neighbor's last Friday --- in the snow!!! Geez, where is Spring???
Earlier in the day on Friday we headed into the Jimmy Fund Clinic for a platelet transfusion. Unfortunately, but not surprisingly, he needed another one yesterday. His red cells and white cells are rebounding but those stubborn platelets are the problem now. They need to be above 50 (on their own without transfusions) before he can continue with the next phase of his protocol in NY.
Though we ARE awaiting the official word from the docs in NY, his Boston doctor says that usually if a child continues to need platelets 2x a week for 2 or 3 weeks in a row, then that would be the signal that they're not g
oing to recover on their own and stem cells will be needed.
Not to be a broken record, but PLEASE PLEASE, PLEASE pray that these pokey platelets recover on their own without the need for stem cells.
And pray they do so soon so we don't have to delay returning to NY. We want to keep things rolling. Delays between treatments make us VERY nervous.
So, Ryan is otherwise doing great. His energy level is back. He's been playing catch with Paul and Matthew gearing up for Little League, which we hope he actually gets to play this year. He's been asked to throw out the first pitch on opening day in town here and he's really excited about that.
The one good thing about being in clinic yesterday was that Child Life had tickets to tonight's Red Sox game for us - a very rare ocurrence. I hesitated because it's a night game and it's been freezing around these parts.
I called Paul to run it by him and he quickly pointed out that it's the home debut of the Sox' new Japanese pitching ace Daisuke Matsuzaka. So we're bundling up and heading to the Fenway later this afternoon. The boys will be wearing their new Matsuzaka jerseys (thank-you Kathy and Harlan)!
Lastly, please once again keep Grace Oughton
in your prayers. I've mentioned her in recent updates. She is in surgery as I write this to remove her tumor that surrounds her abdominal aorta and vena cava.
And as always, thank-you for your continued prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
GO SOX!!!!!
Hi everyone,
Ryan began his chemo this past Thursday (Irinotecan and Temezolemide).
His platelet count was still well below what they'd like to see to begin chemo (41 as opposed to the ideal of over 100). However, we and his doctor decided to go ahead anyway. Waiting till Monday probably wouldn't make much difference in his platelet count.
This round has already been delayed by more than 2 weeks so further delay becomes risky in and of itself. The bottom line is that the docs feel he will almost surely need an infusion of his stem cells in order for his marrow to recover.
The likelihood of it recovering on it's own is remote. It would pretty much be a miracle if it did. But I'm not above asking for a miracle so please pray that his counts bounce back on their own. As I've said before, we're still not convined these stem cells are "clean" as they were harvested a full 4 months before his marrow was clear of disease.
The good news is that so far he is tolerating this round much better than the last - thank-you God! No vomiting and no diarrhea! He's eating okay. They're loading him up on anti-nausea meds and some of them make him pretty sleepy so he's "out" a lot of the time.
The bad news is that they have him on precautions.
Last time we were in-patient he came down with a nasty intestinal bug, C-diff, which is contagious. Even though he's long since over it, their rules state that they have to have 2 days of negative cultures in order to take him off precautions.
Did anyone tell me this when we were in clinic on Monday so we could have gotten the testing done and squared it all away? Noooooo.
Did anyone mention it early on Thursday at the clinic so we could have at least started to get the testing done? Noooooo.
He had one negative test done Friday. Do they run these tests on the weekends so we can get the second negative test? Nooooooo.
Precautions means he's in a private room, cannot be around other kids, cannot go to the playroom. They have us in the transplant unit since that's the only place a private room was available.
He's miffed, I'm miffed but we're stuck. I'm doing much better with anger management though. I didn't choke anyone this time. Fantasized about it maybe........
So, if he continues to do well, we should be released late on Monday. VNA will come to the house to draw labs a couple times a week. We'll most likey be going into the clinic for transfusions fairly often. I'm not sure at what point they decide that the stem cells are indeed needed. I assume we'll hear more about that in the coming days. In the meantime, being hospitalized again for fever/neutropenia is also pretty likely but please pray that he doesn't spike any fevers while his white counts are low. Again, that would be a minor miracle but hey, it can't hurt to ask.
That's about it on our end.
Please continue to pray not only for Ryan but for all our brave NB warriors.
Especially, Penelope London, who I mentioned in my last update.
Once again, thank-you to everyone who has called, sent cards, e-mails, meals, etc. We're so grateful for your love and support.
Love,
Norma and Paul
Just a quickie - sort of. Chemo did not start today. His platelets were
too low. We'll do labs again on Thursday and if they're up where they need to be, chemo will start then.
His last day of radiation is tomorrow. As is the custom, the Child Life person throws a mini party on the last day. The child gets to pick a food and beverage to have and also gets a gift. Ryan chose chips and salsa and
cream soda. Mind you his radiation is over by around 9:15 a.m. I tried to
steer him towards a more breakfasty choice but he wants his chips and salsa. Rolaids here I come.
PLEASE PRAY THAT THOSE PLATELET COUNTS ARE UP ENOUGH TO BEGIN CHEMO ON THURSDAY.
BTW, this is a very high dose of 2 different drugs, Irinotecan and Temedor. More than twice the dose Boston usually gives (remember this the NY protocol). The combination of these 2 rounds of chemo plus the radiation he's received means there's a good chance he will need an infusion of his stem cells in order for his marrow to recover. We're a bit nervous about those stem cells being "clean" despite the assurances of the doctors so we're hoping not to need them.
PLEASE PRAY THAT HIS MARROW IS ABLE TO RECOVER ON IT'S OWN.
Lastly, please keep Penelope London
(http://www.caringbridge.org/ny/penelope) in your prayers. She is nearing the end of her battle and is in a lot of pain. Her parents are requesting prayers that the remainder of her journey be as peaceful and pain free as
possible. Please pray for strength, comfort and peace for her parents as
well.
Thank-you.
Love,
Norma and Paul
Hi everyone,
It's been a pretty quiet week around here. WOOO-HOOO!! Ryan is feeling great, although still experiencing some weakness in his legs, particularly when going up stairs. He's eating pretty well and even gained back about 4 lbs. We've been traveling into Boston every morning for his radiation, which is now going quite smoothly. He hasn't experienced any of the unpleasant side effects they said could happen such as nause, vomiting, skin irritation and sore throat. Thanks for all the prayers. They're working and keeping these nasty side effects away!! The one side effect we knew we wouldn't be able to avoid was low blood counts. Today's labs showed the hit his marrow has taken. He's officially "neurtropenic" meaning his white cell count is so low that he's unable to fight off infections. His platelets and red cells were low as well but not low enough to need a transfusion.
I met this past Monday with Ryan's oncologist and the plan is to start his next round of chemo on this coming Monday. Since he had such a rough time with the last round, we decided it would be better to do this one in-patient (5 days). That way they can keep a closer eye on him and stay on top of any issues that may arise and, hopefully, avoid a repeat of what he went through last time. However, with today's labs, a Monday start is now in question. Both his ANC (absolute neutrophil count) and his platelet count have to recover before they'll do another round. It could happen by Monday but who knows. This second round has already been delayed a week and I hope it doesn't get delayed again.
Ryan's hair has been falling out quite a bit this week. Literally every time you touched his head it would come out in clumps. Tonight Paul finally took his electric trimmer thingy and gave him a buzz cut of what was left. At least it's evened out and doesn't look all patchy. Ryan's been surprisingly at ease with himself these days. I took Matthew to karate tonight and Ryan came along (this was before the buzz cut). I asked before we left if he wanted to wear a cap. He said no. One of the kids there asked about his scar and he just very calmly and matter-of-factly said "I had an operation on my head". That was that. We'll see how he does now that he's almost completely bald and the scar is much more prominent. I thinke we'll be looking for a new cap to replace the much loved but now too small red cap he wore the first time around.
Please pray that Ryan doesn't develop any fever/infections due to his low counts. Pray that he can start his chemo on Monday and that this round will be "kinder and gentler" than the last. We're anxious to get this phase of his treatment over with and get back to NY for the next phase.
Thank-you!!
Love,
Norma and Paul
P.S.
We met another NB child during our stay at Children's recently. Her name is Grace (www.savegrace.com). Grace needs specialized surgery soon in NY and her family is fighting with their insurance company. Please pray for all this red tape to get resolved SOON so they can move forward with her treatment in NY.
March 17th Update.
Hi everyone,
We're home!! Got home yesterday afternoon just as the snow was really starting to get into full swing (thanks for the ride Auntie Mary!). I sort of went "postal" again before we left. We were trying to beat it out of there before the storm but NOTHING happens quickly in a hospital. At 12:45 p.m. I simply infomed the voice at the other end of the call button that we were leaving - discharge papers or not, seeing the docs or not. He said that we needed our discharge papers. I said I'm not waiting anymore. B-bye. Within 5 minutes the discharge papers were in my hand and as I was signing them the docs coincidentally appeared. Hmmm.
Ryan is feeling MUCH better. He's eating almost a normal amount. We're giving him IV hydration at home to make sure we stay on top of things. An IV pole in the living room just makes such an addition to our decor!
He still feels a bit weak but hopefully, as he eats more, he will regain some strength. While in-patient I'd take him over to radiation every morning in a wheelchair because it was too far for him to walk. Since the chair is so big, I would stick a pillow behind him so he could lean back. Friday I grabbed his pillow off of his bed and noticed the first strands of hair that have fallen out. Expected it. Been there before. Still almost cried. There's just no getting used to this $*#&!!
He was technically supposed to start his next round of chemo this coming Monday but since he's just recovering from this awful episode, they want to wait and see how he handles the radiation since it can cause vomiting too. I think we'll play it by ear and see how he feels in a week or so. I meet Monday with his doctor so I'll get a better idea then.
One month ago today, Black Saturday, we learned of Ryan's relapse. Paul had taken him for his MIBG scan while I packed up our room at the Ronald with the expectation that, as per usual, we'd hit the road as soon as the scan was done. The luggage cart was all loaded and when my cell phone rang, I was sure Paul was going to say "We're on our way back. Meet us downstairs." But the words "There's something questionable on his scan. They want us to go to Urgent Care." came instead. Sitting there in Urgent Care for the next couple of hours we had ourselves pretty much convinced that it would turn out to be nothing and we were all worried for no reason. He had had a runny nose. Maybe the gunk in his sinuses soaked up the MIBG. But no. Our run of good luck had come to a screeching halt.
It's hard to believe all he's gone through in just one month. Brain surgery, chemo and it's nastiest side effects which bought him an eight day hospital stay, and now radiation to his brain and spine. I've met a couple of very nice moms at radiation. Ryan still has his hair and his incision is still pretty fresh-looking so they assume we're "newbies". They very kindly try to give ME tips and the "It'll all be fine" speech. I smile, say "uh-huh" and try not to be annoyed at how upbeat they are. They're still in that mode of MY child wil beat this because it's MY child and only OTHER PEOPLE's children die. Sigh.
Let's see. Gotta end on an upbeat. The boys are enjoying being back together again - we all are. They've each received gifts of new Webkinz and are having fun playing on-line with them.
I hope to get to more personalized "Thank-you's" out soon but for now, we want to express our sincere gratitude to everyone who visited Ryan in the hospital, sent cards, gifts, e-mails, meals on wheels, etc. Your kindness and support is overwhelming and deeply appreciated.
Please continue to pray for Ryan. Pray he experiences no more ugly side effects from his treatments. Pray the next set of scans bring good news. Pray for wisdom and guidance for the doctors and us as his treatment progresses. Pray for all our little NB warriors.
Love,
Norma and Paul
Still more Chemo! 3-14-2007
Hi all,
Well, we're still in the hospital. The issues over the last few days have been his electrolytes. Due to all the diarrhea his potassium and phosphorus levels were very low and needed to be supplemented. Today was the first day they were actually in the normal range. However, his heart rate was elevated today and we're not sure why. We'll be here at least another night and probably most of tomorrow - best case scenario.
His radiation began on Monday. Another day of frustration. Okay - ANGER. I never seem to get the same story twice over there. I had been told on his last day of planning that he would get anesthesia for this first day of treatment as it is longer than the rest. This is because he had had such a hard time towards the end of the planning (crying). Apparently, the people in the room that day did not convey that info to anyone else so no anesthesia team was ready when we got there. He had to do the whole thing awake AGAIN. Being the Amazing Super Ryan, he soldiered thru it but I was so angry I could have hit someone. I just wanted ONE THING to be easy for him. ONE THING that didn't have to be an edurance test. I was told that all the other days from then on would be really quick. We show up on Tuesday and now we're told that no, this will also be longer because that have to do more X-rays. If looks could have killed, everyone in that room would have been dead. He's had what I would call the worst, most miserable 2 weeks of his life as far as being knocked on his ass due to chemo and enduring all the radiation planning/treatment. The flames shooting out my ears earned me a sit-down with Dr. Marcus who's in charge. She was very apologetic about the mis-communications. Everyone thought he had done fine and could tolerate it all well. I explained that Ryan cooperates with everything and they could be sticking pins in him and he'd lay still for it but it does NOT mean he's doing fine. But now it's too late as he's already been thru the worst of it. So, day 3 is behind us and it is indeed going much quicker now. I think he has 9 or 10 more days. Now I'm just hoping and praying he doesn't go back to nausea and vomiting, which is quite possible. PRAY, PRAY, PRAY. -This poor kid deserves a break.
Love,
Norma and Paul
More Chemo, Side Effect setback. March 11, 2007
Hi everyone,
Since my last update things sort of went downhill. Literally right after I hit the "send" button on last Wednesday's update, I went out to the living room. Ryan was asleep on the couch so I woke him to bring him upstairs to go to bed. The vomiting and diarrhea hit again and the poor kid sat on the toilet for the next hour and a half, with a basin on his lap. He managed to sleep thru the night but got up the next morning and it started all over again with a vengeance. He was supposed to start radiation that morning but we just drove straight to the clinic. He was so weak Paul had to carry him to/from the car. THey took one look at him at the clinic and said radiation definately wasn't happening. He was started on IV fluids as he was VERY dehydrated, plus IV anti-nause meds since he wasn't keeping the oral stuff down long enough for it to work. Later that afternoon (Thursday) we were admitted to Children's to continue the IV stuff and have been there ever since. The plan was to get him hydrated and get him past the vomiting and diarrhea so that he can get the radiation started on Monday. As of yesterday the vomiting had stopped but the diarrhea is still not under control. He hasn't really been eating at all - a bite here and there. He's lost about 6 pounds.
We thought we'd be going home today. They wanted to set him up for overnight IV fluids at home to keep him properly hydrated but, being the weekend, getting that in place with the home infusion agency hasn't been easy. Plus they're worried he might have some sort of bacterial thing going on in addition to reaction to the chemo since the diarrhea is still so bad. So we're stuck here for at least one more night.
He has perked up a bit today. He had been sooooo listless all week. He 1/2 a hot dog a little while ago which is the most he's had in one sitting in over a week.
Even though we didn't get placed on the oncology floor due to a lack of beds, some of his buddies from there came up to see him which was really nice. Sara, the child life specialist, even brought him up the Spin Art that he loves so much. And his FAVORITE nurse, Elizabeth, came by too which really made his day!
So, with a little luck, he'll get his radiation started tomorrow and they'll send us home afterward.
Thank-you for all your prayers for Ryan. Please continue to pray that these horrible side effects go away and STAY AWAY for the rest of his treatments. Please also remember in your prayers our friend Alexandra who also relapsed recently. She begins chemo this week.
Love,
Norma and Paul
Hi everyone,
Well it's been a rough week and it's only Wednesday! The nausea, vomiting and diarrhea have not gone away despite keeping him on the anti-nausea meds and Immodium. He woke up Monday morning vomiting so they did not use anesthesia for his radiation planning - too much risk of aspiration. So, the poor little guy had to spend about a half hour laying perfectly still with his head completely encased in that mask/mold thing they made for him. He did sooooo well until the last 5 minutes or so when he started crying. His tears were dripping through the mask. There wasn't a thing I could do for him except talk to him and tell him how great he was doing. The radiation people felt bad and never ended up doing the tatoos at all. They just left all the magic marker marks on him all down his spine and they'll use that to line everything up for the treatments. They cover the marks with these clear tabs to protect them. That ordeal earned him a "whatever you want at the gift shop".
He chose gummy worms and Mentos!! And, FINALLY, they said he could have a shower so the next morning he got his first shower since Feb. 21st!! The sponge baths were getting old.
His appetite has been nill and what little he does drink or eat, he usually throws up. Consequently, in addition to needing IV fluids both Monday and today, he's lost over 5 lbs. in one week. He's pretty weak and listless. Please, please, please pray that he bounces back from this soon and gains his strength back. We're hoping and praying the radiation treatments don't compound these problems.
Those treatments start tomorrow and the first day is longer than the rest so they want to anesthetize him for it. Again, please pray that he does not wake up vomiting tomorrow because I don't think I could get him to put his head back in the mask again if he's conscious.
We were in the clinic ALL DAY today and one thing we did in between IV fluids, puking and pooping, was to sign Ryan up to be a Pedal Partner for the Pan Mass Challenge (www.pmc.org) . This is an annual 2-day bike event that raises money for the Jimmy Fund at Dana Farber Cancer Institute. He will be "partnered" with a rider who he will get to meet and there will be a large poster of him (and all the other pedal partner kids) placed along the bike route. Just a nice way of inspiring the riders to push on for this great cause.
Finally, I ask for your prayers of healing for another of our dear NB friends. We were in treatment together in NY for many rounds of 3F8 with Alexandra and her mom. We all became fast friends. They were in NY just last week for "routine" scans when a spot showed up on her leg.
Thank-you for your prayers, e-mails and support.
Love,
Norma and Paul
P.S. Please visit the front page of Ryan's site and click on "Get Involved". I encourage all of you to e-mail your politicians about the upcoming budget and proposed funding cuts in pediatric cancer research. Take a look at the clip from abc news to find out more, then take a few minutes and click the second link. This link allows you to e-mail your politicians and tell them to support childhood cancer research. There's a standard letter you can use, or you can compose your own. Please help us with this cause. It only takes a few minutes.
Hi everyone,
Ryan's first round of chemo is almost done.
Today will be the last of this 5-day course. The first 2 days we did at the clinic, the last 3 we've been doing at home with the visiting nurse.
It's been hitting him fairly hard with nausea and vomiting. Yesterday we added another anti-nausea med to the mix so hopefully today will be easier on him. He's also had some diarrhea, which is a common side effect of Irinotecan, but I think we have that under control. Yesterday he was pretty listless all day. His appetite is almost non-existent. We're trying to keep him drinking so he'll stay hydrated. Please pray that he has an easier time of it today.
Monday we return to Boston for the second part of his radiation planning.
They'll knock him out again for this. Last Thursday one of the things they did was place magic maker "x"s all down his spine where they'll put tattoo marks on Monday.
He was glad to hear he'd be asleep for the tattooing since he remembered that it hurt the last time they did it for his other radiation he had in 2005.
The actual treatments will start on Thursday and continue every weekday for 3 weeks.
We're going to try and see if he can do the treatments themselves without anesthesia. He'll have to lay still for about 15 minutes, face-down, with his head inside this mold they made of his head last week.
I doubt that I could do it without freaking, but hey, we're dealing with The Amazing Super Ryan here, so maybe he'll surprise us again.
We'll have the anesthesia folks on stand-by just in case though. We just want to see if we can avoid daily anesthesia. Once again, please pray that he has mini
mal side effects from this.
So, while this all SUCKS and we have our moments when fear and anxiety bubble up to the surface, we try to remember that Ryan has so, so many people praying for him.
He is in God's hands. Please pray that He continues to guide us and Ryan's doctors as we continue on this journey.
I leave you with this wonderful prayer that my Uncle Jim sent to me early on in Ryan's treatment.
Heavenly Father
I call on You right now in a special way.
It is through Your power that Ryan was created.
Every breath he takes, every morning he wakes,
and every moment of every hour he lives under Your power.
Father, we ask You now to touch Ryan with that same power.
For if You created him from nothing, You can certainly recreate him.
Fill him with the healing power of Your Spirit.
Cast out anything that should not be in him.
Mend what is broken. Root out any unproductive cells.
Open any blocked arteries or veins and rebuild any
damaged areas. Remove all inflammation and
cleanse any infection.
Let the warmth of Your healing love pass through Ryan's
body to make new any unhealthy areas so that his body
will function the way You created it to function.
And Father restore Ryan to full health in mind and body
so that he may serve You the rest of his life.
I ask this through Christ our Lord.
Amen.
Love,
Norma and Paul
-----------------------HOME----------------------------
Hi,
HOME SWEET HOME!!!
We made the drive home on Sunday
. My brother Bob came down to pick us up. Of course it wasn't without a little bit of drama. Ryan had been vomiting off and on since he was released on Saturday which made us nervous, especially since we were about to put him in a car for 4 hours.
To be on the safe side we called the pediatric oncologist on-call and, naturally, was told to bring him in to Urgent Care.
They wanted to do a CT scan to make sure everything was okay. The scan was normal and FOUR hours later we left.
We made a quick stop to see his Nanny and Grampy on the way. He was self-conscious about his incision so wore a hat the whole time.
He said he thought it would scare people. I told him that no one would be scared by it.
He replied that he looked like a freak and scared himself when he looked in the mirror.
Thankfully, he's getting more comfortable with it now.
Ryan's buddy Duncan and his mom came by for a quick "hello" after school on Monday. They did a great job of putting Ryan at ease and since then he hasn't worn the hat.
Yesterday we headed into Boston and met with the radiation oncologist there. The planning for cranial/spinal radiation is quite complicated and will take place this week and early next week.
The actual radiation treatment will begin next Thursday.
We return tomorrow for the first part of the planning which will take about 1 1/2 hours.
They make a mesh type form of his face and head. He will have to lie face-down for the planning and the treatment itself.
They're going to anesthetize him tomorrow since it's such a long session
. For the treatment we're going to try and see if he can get through it awake, but if not, they'll knock him out for that too. It will be every weekday for 3 weeks.
Today we were at the Jimmy Fund Clinic to begin chemo.
In at 8:30, out at 4:30. A typical Jimmy Fund day!!
Ryan has felt okay for the most part. Just tired and a bit "woozy" as he puts it.
He got to watch "Pirates of the Carribean" during the infusion and enjoyed that until he fell asleep
. This round of chemo is for 5 days and it's all outpatient. Since we'll be in Boston anyway for the radiation stuff, we're doing the first 3 days at the clinic and then the visiting nurse can come to the house to do the last 2 days.
After having his port accessed and an exam by the doctor it was time to head to the bed area for the infusion.
Back when he was having treatment in 2004, he always had a favorite bed he'd go to.
He went straight for that bed again today, plopped down and reached for the TV remote.
I, on the other hand, lost it when we came around the corner to the bed area.
I was fine up to that point but being back there again just hit me hard.
It's the part of the clinic I never wanted to see again and never thought I would.
I made a hasty retreat to the bathroom to regroup. D-E-E-E-E-E-P breaths.
Ryan, once again, just rolls with the punches. Have I mentioned lately how amazing he is???
?
One great thing is that Ryan has the same primary nurse at the clinic that he always had. She's wonderful and having a friendly, familiar face made a huge difference for both of us.
So, things are moving forward.
Thank-you for keeping Ryan in your prayers. Please pray for his complete healing and that does not suffer too many side effects from the chemo and radiation.
Love,
Norma and Paul
Hi there,
Real quick update. Ryan's surgeon came in at 7 a.m. today, took his bandages off and cleared him to be released.
We're just getting his prescriptions and then we'll be back at the Ronald for the rest of today and then homebound tomorrow!!!!!
WOOO-HOOOO!!!
Hi everyone,
Ryan had a pretty good night. He never needed any pain medication except for right after surgery. His worst complaint last night was the TV in our room didn't work!! We actually had to go across the street to Cornell as they didn't have any room for him here at Sloan in their ICU. Today we came back to Sloan to a regular bed - no ICU needed. It's literally across the street but both trips necessitated an ambulance ride. We had a little bit of a scare last night when on of the residents thought his left arm was weaker than the right. A CT was done late last night and it was normal. They think the weakness is just due to swelling and will subside when the swelling subsides. His right eye area is REALLY swollen. He looks like Rocky Balboa! But that is to be expected and will go down with time.
Today is still doing well. However this morning he started getting very sad and was crying. I think he's had enough of this crap. He wants to go home. So physically he's doing great (thank-you God) but emotionally he's getting a bit down. He's entitled! He is a little happier being back here at Sloan in more familiar surroundings though -- and the TV works!!
Some of you have asked about sending cards, etc. to Ryan here in NY. The plan right now is for us to head home to do his radiation and chemo. If he continues to do well, we should be able to head home on Sunday I think. Therefore, I wouldn't send anything to NY but I'm sure he would love to receive cards at home (25 Garrison St., Groveland, MA 01834).
Thank-you again for all the e-mails, well wishes, prayers and support. It has meant the world to us.
Ryan, once again, has a long road ahead of him. Please continue to pray for his full recovery and that he will soon be NED FOREVER!!!!!! Also pray for us all to muster the strength to travel this road again. I think we're past the scariest part but we're SO dreading the next few weeks.
Love,
Norma and Paul
3:54 PM EST, February 22, 2007:
The Amazing Super Ryan has sailed thru his surgery today. They were done much sooner than we expected (before noon). All went perfectly, no problems and he was able to get everything out. Ryan is still in recovery and we're just waiting for a bed in the Ped. Observation Unit. He did have some pain in the beginning but that's under control. About 5 minutes after we came into recovery to see him, he asked "Is there a TV in this room?" That's when we knew we were good.
More later when we get a chance.
THANK-YOU FOR YOUR PRAYERS.
Love,
Norma and Paul
___________________________________________
..Now for the regular prior sequence!
Well, remember that cliff I made reference to in my last update. We just got pushed off. Ryan has relapsed in his brain. He has a tumor about the size of a golf ball in his right frontal lobe. We're still waiting for the MRI report which should be in tomorrow. The very preliminary plan is immediate surgery. Immediate meaning probably the first half of this week, depending on the surgeon's schedule. There's a 95% likelihood that it's neuroblastoma but they won't be certain until they take it out. There will be radiation to his brain and spinal column, chemo of course, and another type of antibody therapy that is used for brain relapse. The type he has been getting, like most chemos, does not cross the blood/brain barrier. They will implant a device that allows them to inject the antibodies thru this barrier and thus bathe the brain and spinal column with the antibodies. This is a treatment that has only been done for the past 4 years. It's been done on about 10 kids and thus far, they're all doing fine. Long term prognosis is impossible to predict since this hasn't been done for that long a time.
Right now it appears that this is the only site of relapse however we do not have his bone marrow results yet. Nothing else lit up on the scans though.
I just re-read what I wrote and it sounds so matter-of-fact. The truth is we're so numb with shock and horror we're currently devoid of emotion. It will come I'm sure.
I will update again when we have more info.
Obviously, we ask for your prayers. Ryan always has been and remains in God's hands.
Hi again,
We got a chance to actually look at the MRI today with a neurologist. The tumor is sort of dumb bell shaped with a fair amount of fluid/blood around it. It was so creepy to see this horrible thing in his head. We also had a preliminary talk with the surgeon. He feels that most of what we're seeing is the fluid/blood rather than all tumor. Some of this extends down into his nasal cavity and some is near his optic nerve. He seemed very confident that surgery would be successful, and barring any unforseen complications, he doesn't expect any impairment due to the surgery.
The MRI included his spine and that appears to be all clear which is VERY good news. The other good news is that the tumor is on the surface of the brain rather than way inside which makes it easier to resect. Apparently, that is a characteristic of neuroblastoma brain tumors. Ryan has absolutely no symptoms and has passed all neuro tests with flying colors. They may want to do another CT to see if anything has infiltrated the bone above the eye, but he doesn't think it has.
So, we are actually going to be discharged today. We will wait to hear from them about a meeting with the team tomorrow. Scheduling surgery may have to wait a day due to the holiday - administrative staff are off tomorrow - but still hoping for this week.
Brain relapse is an area that they haven't dealt with to a huge extent. Mostly because not that many years ago, kids with NB simply didn't live long enough to get to the point of a brain relapse. If they did, treatment options were minimal and prognosis grim. Now that they're able to extend life with treatments such as the antibodies, they're now seeing more of this type of relapse. And now they have this other way of administering the antibodies as I mentioned yesterday directly to the brain and spine which they've had great success with so far. We're still freaked out, but everyone we talk to seems to be putting a positive spin on things.
We have a plan. After an agonizingly long wait today, we met with Dr. Kushner and he laid out the plan. First is surgery which is scheduled for this Thursday. We have not had our official conference with the surgeon to go over the details yet but from all accounts, kids bounce back amazingly fast and amazingly well from this type of surgery. We also met with the radiation oncologist today and as early as some time next week he will begin radiation to his head and spine. This will be Mon-Fri. for 3 weeks. Concurrently, he will receive chemo (Irinotecan and then Temedor). These are two of the few agents which will pass the blood/brain barrier. Major side effects are low blood counts - we've been there before. With the combination of both radiation and chemo, in some cases it's a big enough hit that a stem cell rescue is needed. He has plenty of stem cells back at Dana Farber. At some point yet to be determined he'll have that device I mentioned before implanted under his scalp. It's called an Ommaya reservoir. It has some sort of catheter type tube that goes down into his brain ventricles. This is how they will administer the antibodies (either "hot" 3F8 or 8H9) to his brain and spine. I believe it's two rounds of these antibodies. Later down the line he can go back to the regular antibodies (3F8) that he's been receiving. Much further down the line there'll be more chemo, possibly more Accutane which he's done before.
There's a good chance we will be able to do the chemo/radiation in Boston which will be much better for our family life. It just hinges on whether or not Boston can get things scheduled soon enough. If not, we'll be staying in NY for a while. Obviously, all the other stuff will be done here in NY.
The most important thing said today is that they're still going for the cure. They've had astounding success with this protocol. So, we're shaking off the shock of it all, putting our game faces on and gearing up for this new fight. My cousin Joe's wife said it best: "setbacks are just setups for a great comeback" (love that one - thanks Lauren). Ryan is as tough as nails and The Amazing Super Ryan will triumph again. Already he is taking this in stride. He seems almost eager to get the surgery done as he keeps asking "when are they going to take my tumor out?" I told him today about the need for the radiation and more chemo. He seemed more annoyed and exasperated than scared or concerned. Actually, he was more upset about losing his hair again.
This relapse really shocked everyone - doctors, nurses, other NB families alike. In an odd way we feel as if we've let everyone in the NB community down. Ryan was such a shining success story that this really knocked everyone over. His was a story that gave other families hope. But, he will make his comeback and be a source of inspiration all over again.
We want to take a moment to thank everyone who has sent e-mails offering support and, most importantly, prayers. It means the world to us to know so many are praying for him.
We met with the surgeon late this afternoon. I swear he talks about it like he's removing a splinter!!
Anyway, the surgery is set for 7 a.m. tomorrow (Thurs). We'll be at the hospital at 6:15.
On one level we 're scared shitless, on another level we're very reassured by all the accounts we've heard of speedy recoveries.
From surgery he'll go to the POU (Pediatric Observation Unit), sort of their version of ICU.
The surgeon takes great care to minimize any visible scarring so his incision will be behind the forehead and hairline but it will be pretty big - almost ear to ear. They expect he'll be out by early afternoon. Barring any complications, Ryan may be released from the hospital as soon as Saturday!!
After that, we're still up in the air as to whether or not we can do the chemo/radiation in Boston.
Boston says they can do all the planning next week and begin the treatment the following week.
This afternoon Dr. Kramer (NB attending here in NY) was pretty adament that she wanted the radiation treatment to start next week, not just the planning. Sooo, I called the radiation oncologist in Boston with that bit of news and tomorrow she and the Dr. Kramer will talk and hash it out.
Both Ryan and Matthew seem to be dealing with all this pretty well. Ryan says he's not scared. Matthew internalizes more so it's hard to get a reading on him. I think he's glad he's here and not shuttled off somewhere.
As for Paul and I, I think on an itellectual level, we know that he has the best surgeon possible, is at the best hospital, and that so many other kids have come thru this type of surgery just fine.
As parents and on an emotional level though, we're just plain scared. How can you not be??
We have a lot of support here though. Paul's brother and sister are here as well as my good friend Sue.
Tomorrow my sister-in-law Pam who is visiting family in NY will come too.
Plus many NB familes we know are here in NY this week.
I guess that's it for now. I'm not sure when we'll be able to update again but hopefully by tomorrow evening.
Needless to say, we ask for your continued prayers for Ryan.
Love,
Norma and Paul
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