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Wed, August 11, 2004 11:38 PM
Hi there!
It has been a while since I've entered a journal update. Sorry! I know many of you check up often.
Baby Dylan is doing very well! We are in the middle of getting his end-of-treatment studies done. Today he was injected with an isotope and will get his MIBG scans on Thursday and Friday. So, a long three days back and forth to the hospital. So, we get to see all the familiar faces of our favorite nurses at PACU (pre/post aneshtesia care unit), pediatric radiology and nuclear medicine. This is the test that lights up any active neuroblastoma cells. On Monday, the final study is done - an MRI.
So, the reason I haven't written in a while is that it is darn hard having two children under the age of two! While Dylan was in treatment, Sasha was with her grandparents most of the time. I had the luxury of focusing on Dylan to get him on the road to recovery. Now, I have the two of them most of the time (my mom and dad still help a lot!). Oh my - this place is meltdown city. Sasha's deep into her "terrible twos" - you never know what will set her off. However, on the flip side, there is such pleasure in watching Sasha blossom. She is learning so quickly. My mom taught her the Spanish word "guapo" (handsome) - and pointed to Dylan. Well, when we returned home from the hospital today, Sasha squealed when she saw us come in the door, "Dylan! Guapo, Guapo, Guapo!" So, you see, the good times outweigh the meltdowns!
A friend of mine forwarded the following and I think it really does a great job at explaining some of my emotions since Dylan's diagnosis. While the chemo and surgery are behind us, we still are working on the other issues with his legs/feet and elimination.
Welcome to Holland
I am often asked to describe the experience of raising a child with a
disability to try to help people who have not shared that unique
experience to understand it ... to imagine how it would feel.
It is like this:
When you're going to have a baby, it's like planning a fabulous trip
to Italy. You buy a bunch of guidebooks & make your wonderful
plans. The Coliseum, Michael Angelo's, the Gondolas in Venice. You
may learn some handy phrases in Italian. It's all very exiting.
After months of anticipation, the day finally arrives. You pack your
backs and off you go. Several hours later the plane lands. The
Airhostess comes in and say: "Welcome in Holland"
"Holland" you say, "What do you mean Holland? I signed up for
Italy. I am supposed to be in Italy. All my life I've dreamed of
going to Italy."
"But there has been a change in the flight plan. We have landed in
Holland, and here you must stay."
The important thing is that they haven't taken you to a horrible,
filthy place, full of famine and disease. It is just a different
place. So you must buy new guidebooks and you will learn a whole new
language & you will meet a whole new group of people you would never
have met.
It is just a different place, It's slower pace than Italy, less
flashy than Italy. But after you've been there for a while, you look
around and you begin to notice that Holland has Windmills, Holland
has Tulips and Holland even has Rembrandt.
But everyone you know is busy coming and going from Italy, and they
are bragging about what a wonderful time they had there. And for the
rest of your life you will say "yes, that is where I was supposed to
go. That is what I had planned."
The pain of that will never go away because the loss of a dream is a
very significant loss. But if you spend your life mourning about the
fact that you didn't got to Italy, you may never be free to enjoy the
very special, the very lovely things about Holland.
Wednesday, July 14, 2004 1:11 AM CDT
Hey there - Sorry to keep you all hanging there for a couple of weeks...
So - Dylan ended up staying at the hospital for one week to recover from his tumor resection. It really is amazing how fast babies heal compared to adults!
As for pain management, Dylan had shots of morphine as needed for two days - so no morphine drip was required! Tylenol really is a super drug. Dylan relied on Tylenol for about 10 days to help manage the pain and soreness.
Well, our stay at the hospital did have its bumps in the road. Most notable -- It was understood that Dylan's central line would be removed during his surgery on June 21. While he was being prepped for surgery, he needed a couple of IVs: (1) to administer the anesthesia and (2) to provide fluids for hydration. Well, turns out Dylan was poked for 45 minutes with no successful IVs - they just couldn't get the veins! I've been told this happens when the babies get chubby (hey, Dylan's only 50th percentile on weight!). So... because they needed to push the meds and fluids into him, and continue to do so during recovery, the surgeon decided to leave the central line in.
Ok, this does make sense. However, we were not going to leave that hospital with that line still in. First, it is a big source of infection having this hole in Dylan's chest. Secondly, it is pain to take care of - requiring sterile cleanings. FInally, the line is like a scarlett letter -- it means you're sick, that you have cancer; leaving the hospital without the line meant Dylan was in recovery.
So, our final day as an inpatient comes along and one of the surgical interns tells Ken that Dylan will be discharged - with the line still in! The surgeons were booked and couldn't fit the removal in the schedule. URGH. We'd have to come back as an outpatient to have the line removed. This was so unacceptable to me - besides all the points I mentioned, scheduling surgery and anesthesia together as an outpatient is not the simplest thing. That requires schedule coordination between two departments - and would most probably be a couple of weeks out.
So, I put my foot down and said we weren't leaving our room until Dylan's line was removed. Even if we had to stay one more night. Well, the newest surgical intern suddenly found an opening and fit Dylan in (maybe he just felt bad for walking in on me pumping -twice!- that's why the curtains were drawn and the door was shut!!).
So, we go to Ambulatory Care and there are three anesthiologists, a surgeon and a couple of technicians. They only had time to give Dylan a local aneshtetic and assured me Dylan would not feel a thing. WRONG. This was the worst experience during our stay. The line didn't just pull out, as it usually does, so the surgeon had to dissect Dylan to get it out (the last time I heard the word dissect was freshman biology). Boy, Dylan was screaming bloody murder like you wouldn't believe - for a long time. When we returned to our room, our nurse said she called down to see how the procedure went and was told it was "pretty traumatic". You think?
Dylan came home the afternoon of June 25 and has been doing very well. The only thing is that he had 5 days in a row where he couldn't sleep any longer than an 1.5 hour at a time (and he had been sleeping through the night prior to the surgery). In addition, a handful of days, including today, he's acting colicky. We went in to check if he had an ear infection or a UTI - but both his pediatrician and oncologist cannot figure out why Dylan has been having these intense crying fits. It is almost impossible that a 5 month old would develop colic having not had it before. So, we're going to give it a few more days - and if he continues to have these nightly meltdowns, we'll go back in for more in-depth evaluation.
Since Dylan has been home, he has enjoyed "normal" life! We celebrated 4th of July by going to the symphony concert out on the high school lawn & went to the town's ice cream social. Last week Dylan went to Sasha's Music Together class ( I think he liked it more than Sasha) and to the park for playgroup. And this past weekend he went to our playgroup's Family Day breakfast in the park, Monterey Bay Aquarium and Music in the Park. It is so great to have the time, energy and health to enjoy life as a family!
Today Dylan had a follow-up appointment at Clinic D - the Children's oncology clinic. This is where we'd go 2-3x/week when he was receiving treatment. Dr. Kuo examined him, the incision healed up great. Dylan also had a blood count test and urine test. Well, we were there for 4.5 hours for all of this!!! Gosh, I forgot that going there can be very time consuming.
The next two weeks will be busy because Dylan needs to do his end of treatment studies - these include an MRI, MIBG and CAT scans. As you recall, he needs anesthesia for all of these - so this means long days at the hospital for these tests.
On another note, Dylan went to physical therapy yesterday. He has made considerable progress in the range of motion in his legs. Since he went 7 weeks ago, he can now lift his legs in different positions. He is still a little behind in his "tummy time" capabilities - doing a half push up, for example - but we'll keep practicing. He is also able to push with both legs. However, I don't believe he has gained any feeling sensation yet. So, keep praying for more recovery in this area. Next week Dylan visits the orthopedist for the first time. Dylan's club feet need to be checked out, as well as his spine. There's a chance there's something not right with his spine - his therapist noticed the spine's shape was needing to be evaluated. So, let's just hope Dylan needs to develop more muscle tone in his back. His oncologist didn't think anything looked out of place - but ortho would be the best since they deal with the bones.
OH - and finally, the pathology from the tumor resection shows mature neuroblastoma cells - exactly what the doctors thought they would find. Meaning - they are not active. Meaning NO MORE ACTIVE CANCER!!!!
So, I think that is it for now. Thank you, everybody, for getting us this far in our journey. I know in my heart that all of our positive thoughts and prayers have helped my son.
Wednesday, June 23, 2004 12:31 AM CDT
Hi Everyone -
This will have to be short as am I writing from the library here at the hospital.
So...
On Monday, Dylan went in for surgery right on time, at 10:10 AM. There were so many people on the team - 2 anathesiologists, 2 surgeons, 1 anasthesia nurse...and who knows who else!
The surgery went on the long side - over three hours. We were getting kind of worried.
Dr. Albanese said the surgery was a success! No organs were damaged in the process (you may recall that his bladder and ureters were quite vulnerable due to the tumor position). The tumor went quite deep from the front of the abdomen back through to his rectum.
Dr. Albanese was able to get everything he could see with the naked eye.
Monday and Tuesday were tough on Dylan as he recovers. He is in his fair share of pain. Plenty of moaning and some screaming. For the most part, Tylenol is helping manage the pain. At the worst times, Dylan gets a shot of morphine. No need for a morphine drip.
He is starting to eat a little here and there. He is catheterized right now. We expect that to come out tomorrow. As long as he can urinate, things look very good. However, as Dr.Albanese explained, because he had to go through so many nerves to remove the tumor, there is a chance that Dylan will not be able to urinate on his own -- this could last a few days, a few week or even months.
Whatever it turns out to be, Dylan should eventually be able to urinate again -- it just takes time for the nerves to recover.
We are in a different part of the hospital. We are on "three east" -- this is the surgical recovery floor. Woah -- the kids on this floor scream and cry a lot!! So many kids are in plenty of pain on this floor. Thank goodness we have a private room. As we were walking around (Dylan's nurse hooked him up with a wagon that accommodates his IV pole, so we can walk around the hospital), one of the mothers came out crying because her son's toddler roommate would not stop screaming. It is very stressful.
We've had some visitors -- grandma, Halmoni, Sasha, Jenita & the girls. Today Johnny & Laura are coming to visit, too. It helps pass the time to have them over.
Thanks for checking in with Dylan.
Tuesday, June 15, 2004 2:24 PM CDT
Hi Everyone!
Less than a week away from surgery!!
Here's what the past week and a half has been like:
Dylan was scheduled for an MRI on Friday, June 4th at 7:30 PM. You may recall that Dylan needs anesthesia for his scans. The scheduled scan lasts over an hour and the machine is *very* loud.
Dylan had one successful bundle-and-feed MRI in the past. This is when I would nurse him in a dark room, have him fall asleep and then he would be bundled up tightly in warm blankets. -- but he is just too old now. He can't sleep through *that* much noise!
The problem was, anasthesia for outpatient procedures was booked through July! So, we had no choice but to try a bundle-and-feed on June 4th. To no one's surprise, Dylan woke up during the scan and was squirming all over the place. So, we left that evening disappointed. An MRI was needed for surgery scheduled on June 21.
So, on Monday, June 7, we went to Dylan's oncology clinic appointment for labwork and told Dr. Kuo about the unsuccessful scan. Patients with surgery do get some priority, so some strings were pulled and Dylan went in for a scan WITH ANASTHESIA the next day, Tuesday, June 8.
We were at the hospital for a total of 7 hours on Tuesday. Checked in the admitting office, went to the PACU (pre/post anasthesia care unit), went down to the basement for the scan and then returned to the PACU for Dylan to come out of anasthesia. This time, it took over an hour for Dylan to come out of anasthesia. The past two times, he came out of it right away.
MRI RESULTS
And so Ken and I met with Dr. Twist (Stanford's neuroblastoma specialist) on Wednesday, June 9. What great news -- the tumor has shrunk SO MUCH!! Even more than Dr. Twist thought it would. There's barely any tumor left inside of Dylan.
I don't yet have the radiology report to let you know the size of the tumor - but I will let you know how much it has shrunk, compared to its
original size, once I recieve the report.
You may recall that there was a difference in opinion about whether or not Dylan would benefit from more chemo after his 4th cycle. It was Dr. Twist who decided that Dylan needed 2 additional chemo cycles. Obviously that was a good call since the tumor went into super shrink mode during those last two cycles.
SURGERY
So, Ken and I meet with Dr. Albanese (pediatric surgeon) on Wednesday, June 16th. We'll learn how he plans to operate, how long the procedure should take, what recovery should be like, etc.
If Dr. Albanese is comfortable with things, we are also trying to arrange for a urologist to be in the operating room, too, so that Dylan can be circumsized. This is recommended with Dylan's UTI history and incontinence issues. If the circumsion doesn't take place on June 21, we'll probably need to wait 4 months - since they want Dylan to fully recover before going in for anothe procedure.
On another note, Dylan will be getting fitted for his special boots tomorrow, June 16th. These were special ordered to help with his club feet.
Grandpa Paculba cut his trip in the Philippines a little short so he could be here for Dylan's surgery. And Halmoni Ryu arrives on Saturday, June 19th to stay the week. Our friend, Jenn Henkel, will also be visiting from North Carolina to provide moral support.
Thanks for checking in - I will update you on the surgery sometime on June 21/22.
Wednesday, June 2, 2004 5:28 PM CDT
Well, we are almost three weeks out from Dylan's last chemo treatment. And even though the treatment was only one day long, this cycle has taken its toll on my little guy. I've been told the chemo treatments have a cummulative effect - so the more you have, the harder it is on your body.
So, unlike Dylan's 5th cycle, when he breezed by without any transfusions, Dylan has needed two transfusions thus far. Last week, we went in for blood work on Monday and Thursday. On both days, once we arrived home, our oncologist called to ask us to return to Stanford to check into the day hospital. On May 24th Dylan received platelets and on May 27th he received red blood cells. Unlike other times he's needed transfusions, Dylan's spirits have been great! He hasn't really been fussy.
You may recall that Dylan has a daily shot of Neupogen (aka GCSF) to stimulate white blood cell production. Typically, he has this shot 10-14 days after chemo and then, because the counts come up, he can stop the shots. Well, 19 days later, he's still taking the shots. Just goes to show that this last cycle has really been harder on his system. It's taking longer to recover.
SAVE THE DATE!!
Dr. Twist believes Dylan will be strong enough to handle surgery soon - so Dylan is scheduled to have surgery on Monday, June 21st! This is the day we've been waiting for - it will be such a milestone!! I am hoping, hoping, hoping that we can say that Dylan is "cancer free" after this surgery. There may be a chance that some tumor will remain in his spine - scooping out any remaining tumor out of the spine is too dangerous, it is actually safer to leave any dead tumor tissue in there. Anyway, if some tumor remains in the spine, I don't think we can claim to be cancer free.
In any case, we were able to schedule surgery with our preferred surgeon, Dr. Craig Albanese. Dr. Albanese is head of pediatric surgery at Stanford and I have heard good things about him from other cancer parents I've met on the Internet. In fact, Dr. Albanese used to perform fetal surgeries at UCSF -- yes, surgeries on babies in utero!
We should expect Dylan to be in the hospital the entire week of June 21st to recover. I hope recovery is smooth. Dylan will be back on morphione, in all likelihood, during this week, and possibly will be getting morphine once he returns home.
Thankfully, Halmoni Ryu is coming out the week of the surgery. It will help to have all the grandparents around for moral support and care for Sasha.
So, between now and June 21, we still have our plethora of doctors appointments keeping us busy driving up and down the peninsula. Yesterday, in addition to an oncology clinic visit, Dylan met with a neonatologist, neurologist and occupational therapist for 2 hours. We return to oncology clinic tomorrow, Thursday. On Friday night, Dylan goes in for an MRI. On June 16th, Dylan will be examined by Dr. Albanese and we'll meet with anesthesia.
Please think special thoughts for Dylan and his upcoming surgery. Please pray that the anesthesia is done to perfection, without any complications; that Dylan does not have to bear much pain; that Dr. Albanese and his team are in prime form to resect all the tumor; that Dylan's recovery is smooth and fast; that Dylan continues to find joy everyday; that Dylan has the strength for surgery - so that it is not postponed; that all our family continues to find the fortitude that has guided us this far.
As always, thank you for checking in on Dylan's progress.
Monday, May 24, 2004 2:58 AM CDT
Hi Guys,
Well, what a draining past few days we've had. Poor Miss Sasha has been miserable. She has a terrible virus with sores in her throat. She's in terrible discomfort - just laying on the floor screaming (not moaning, SCREAMING!) much of the day. Along with the sores in her throat, she has a mild fever and a couple of small sores on her hand. This all leads the doctor to think she *may* have hand-foot-mouth disease (unrelated to the hoof & mouth disease carried by cattle). Apparently, this is very contagious. She could have caught it anywhere since it's viral - maybe even a shopping cart! This is frustrating since we've been very carfeul about minimzing her exposure to other children and limiting her outings. We can't live in a bubble -so we do go to open-air activities, such as the park once in a while. Anyhow - by now we're pros at handling the curve balls life throws us.
To intensify matters, Dylan is at his nadir - a point where his counts hit bottom - this typically occurs 7-14 days after chemo. As you know, chemo patients are vulnerable to mouth sores. And since this is viral ... needless to say, we've been doing our best to keep the two kids apart - quarantining one or the other to one room in the home.
Dylan has been doing pretty well considering. He continues to be a very happy baby who loves to coo. Sometimes he can have a whole conversation with you! Unfortunately, there are outward signs of his nadir - he's a little pale and he has these dark circles under his eyes. He looks wiped. Hopefully his counts will pick back up in the next few days without any need for a transfusion.
This is a busy week - oncology clinic visits on Monday & Thursday, pediatrician appointment on Tuesday, prosthetic appointment for new splints on Wednesday and a urology ultrasound on Thursday. Hopefully he does well so we don't have to go to the hospital on Friday!
That's the update from Los Gatos. Please continue to pray for his full recovery!!
Sunday, May 16, 2004 1:31 AM CDT
Dylan is home! He completed his last cycle of chemo on Friday, May 14th at 8:30 PM.
After spending the entire afternoon at the hospital on Thursday, waiting for our hospital room, at 5PM we were asked to go home. Our room was given to another patient who had an emergency. The oncology floor was full (again)! How sad there are so many little ones fighting for their lives.
So, we ended up checking in to the day hospital on Friday morning. Since this cycle was only one day long, the chemo was administered throughout the day and evening. The day hospital is just that -- a part of the hospital where procedures take place that do not require an overnight stay. Because Dylan has had a history of tolerating the chemo fairly well, the team felt it was OK to send us home without being observed overnight. We didn't even have the choice of checking in for an overnight stay on Friday since all the beds were still taken on the oncology floor.
We were celebrating with all the nurses and even some of the oncologists - what an unbelievable achievement - completing 6 cycles of chemo by 3.5 months old.
So, sometime in the next 4-6 weeks, Dylan will have his surgery. We should expect to stay in the hospital for about 5-7 days after the surgery for recovery. Before the surgery, Dylan will have another MRI.
Unrelated to the surgery, there are a bunch of other on-going appointments, such as the twice-weekly blood tests, our next visit with physical therapy, a home visit to make Dylan new splints for his feet, a follow-up with the urologist, his 4-month follow-up with his pediatrician...
Dylan was incredibly happy and talkative yesterday and this afternoon. Unfortunately, the chemo has kicked in this evening and the fussiness has begun. As well, so has the vomitting. yuck.
Thanks for checking in. Please continue to pray for Dylan's full recovery.
Wednesday, May 12, 2004 1:12 PM CDT
Hi everyone. Well, I haven't made an entry in a while because, thankfully, the past couple of weeks have been uneventful. Dylan made it through his 5th round of chemo without needing any transfusions!
Tomorrow, Thursday, May 13th, we're heading back to the hospital for Dylan's 6th, and FINAL, round of chemo!!! Fortunately, this round is a quickie and we'll only be there for one evening, instead of our usual 3-day stint.
Since I last wrote, Dylan's been to physical therapy. We have some new exercises we're doing with his feet. Right now, he has "club feet" - they flop inwards. So, the exercises help him do what he can't do on his own. I evert the foot - or move the heel and sole of the foot to a more flat position so that once he is able to put weight on his feet, the feet will lay flat. If we didn't do these exercises, Dylan would walk on the sides of his feet and probably drag them a bit.
Also, Dylan had a follow up visit with urology at Stanford. I didn't realize how serious it is for a baby to get a UTI. They are very concerned about the UTI Dylan had in early April. Anyway, the big thing that sticks out in my mind from this meeting is that I was told that Dylan has PERMANENT bladder damage. Right now, he has incontinence - he is always letting go some urine. In the future, I was told he may have problems urinating all together. So, sometime in late May Dylan will be taking some sort of test for the bladder muscle so that we can have a baseline for functionality. Of course, AFTER I left the hospital, I thought of all these questions. The biggest is - what do you mean by the damage is permanant? What exactly is damaged?
So, the next time you say a prayer or think a positive thought for Dylan, please pray that he gains full control of his "elimination" abilities. It just breaks my heart to think he'll have to go to school with a diaper.
Well, I'll write more this weekend or next week once the chemo is finished! Time for celebration!!
Wed, April 28, 2004 10:45PM Pacific
Hi everyone,
Thanks for checking in on Dylan.
Ken's mom was in town for a week (Wednesday-toWednesday; she left this morning). The timing was very good. We were at the hospital Wed, Thurs and Fri last week for the MIBG scan. Then Fri night through Sunday for chemo. Monday he had physical therapy. Tuesday he had a test with radiology for the urinary tract reflux. Good thing Sasha's Halmoni was in town to take care of her!!
We go into the clinic tomorrow to get Dylan's blood count. I have a feeling he's going to need a transfusion again. He was very difficult today and he has bags under his eyes - just like last time. We'll see.
So - even though we are waiting for the final report, the radiologist doesn't think Dylan has urinary tract reflux. Yippee!!
Below is an excerpt from an email I sent to our friend, Laura. I wrote this after the last round of chemo. (We met Laura through Las Madres. She has been such a supportive friend through all of this. In fact, she even set up a fund for Dylan!)
------
Well... Dylan came home tonight. 5 done, 1 to go. The next one is a quickie - only one day's worth of chemo, instead of the usual 3-day regimen. So, as long as Dylan can avoid infection, etc. his surgery should be late May, early June (also depends on our requested surgeon's schedule).
The oncology floor was packed solid, and had plenty of bone marrow transplant patients - so Dylan didn't have a private room. Our roommate was a three yr old also with neuroblastoma.
Oh my goodness - how hard it was to be there with him. He had been there over two weeks because he caught an infection and he looked so sick, maybe the size of Sasha in weight. It was a struggle to get him to drink 90cc of pedia-sure (Dylan drinks that much every feeding). He kept crying because his butt hurts from a terrible rash/sores. And he kept soiling his bed. Made me wonder if Dylan could talk - would he tell me all the same things? Selfishly, I am glad Dylan can't talk to express all those complaints - it broke my heart listening/watching his roommate.
Friday, April 23, 2004 2:57 AM CDT
Dylan handled the anesthesia well for his MIBG scan. So well, in fact, that he woke right up afterwards and was discharged to go home early evening on Thursday.
While we were in recovery, Dr. Kuo stopped by to let us know that we'll need to return today (Friday) to continue the MIBG scan. I am not sure really how this works - but sometimes the MIBG has to be done over 2 days - it has something to do with the isotope tracer that was injected into Dylan on Wednesday.
AND....
Dylan starts round 5 of chemo tonight. (SIGH) We'll be at the hospital through Sunday night.
Even with the neurology evaluation (see previous entry), Dr. Twist believes that 2 more rounds could help Dylan's neurological function. At this point, we have to trust her opinion since she is a neuroblastoma specialist and has seen other patients with similar presentation. That's also why she's the "captain" of Dylan's medical team.
So... our fight is not over. I know the fight with cancer is 5 years -- most cancer patients need to be disease-free for 5 years for the chances of replase to be next to nothing... but I sure was convinved that our fight with chemo would be over. URGH.
With that I am reminded to have patience and that this is the best course for Dylan's long-term recovery.
Please pray that Dylan handles round 5 like a fighter. That his blood counts remain strong (hopefully no transfusions). That he won't get any infections.
...Also that things go smoothly during and after the chemo as our "grandma" support is decreased going forward. Grandma Paculba left this morning for 2 weeks in the Philippines, and then returns to work. Halmoni Ryu is with us through Wednesday. Grandpa Paculba retires on April 30th and looks forward to helping with Sasha the first two weeks of May until he leaves for the Philippines for four weeks. So, after mid-May we may need to consider some options - like sending Sasha to stay with Ken's parents in Houston for a while. We'll cross that bridge when it gets here - that would break our hearts to send her away for a while -- but we know in the big picture it'll be OK.
Monday, April 19, 2004 0:48 AM CDT
On Wednesday last week, Dylan would not wake up - even if you shook him a little and spoke loudly. Basically he was in a deep sleep from 4 AM - 3 PM. Of course, by the time I rushed over to Stanford and we got into the examining room, he was wide awake. After some blood tests, the docs think Dylan had a slight reaction to the blood platelets he received the day before.
So, while we were there, Dr. Twist said that Dylan may not be done with chemo. There is still some tumor hangind out inside his spine. She doesn't think 2 more rounds would do any harm to him - meaning loss of hearing or bladder damage, etc. The main reason to go after this last bit is to save any chances Dylan has to gain close to normal function of his legs and feet. (SIGH)
So, even though the news we got the week before was that it was looking like Dylan had seen the last of the chemo - well... goes to show you gotta wait until all the tests are done.
Well, the next day, Dylan was evaluated by Dr. Paul Fisher who is a neurologist specializing with oncology patients. Dr. Fisher poked Dylan with pointy sticks and it is clear that Dylan cannot feel anything on the bottom of his feet. You could torture him on the bottom of his feet - and Dylan wouldn't react. Dylan definitely could feel things at this knees - he became very upset with Dr. Fisher poked at the knees.
So, here are the highlights of Dr. Fisher's evaluation:
- He thinks Dylan will be bi-pedal - meaning he will be able to walk using both his feet. He should be able to walk independently - without the use of crutches. Don't expect Dylan to be a track star - but what relieving news to hear that this specialists believes Dylan will be mobile!
-Dr. Fisher doesn't think the lack of functionality is caused by the remaining tumor in the spine. Rather, because the tumor grew so large while Dylan was in utero, Dylan's nervous system didn't completely develop. So, imagine all the nerves that exit the spine(ie., the sciatic nerve) -- the doc thinks it's these underdeveloped nerves that are causing the lack of response in Dylan's feet and part of his legs.
-Dr. Fisher said he is a very optimistic man - and that if there were some chance that add'l chem would help Dylan move his feet, he'd say go for it. However, he doesn't think more chemo is going to help with this.
-The doc said what we need to do is get Dylan working with orthopedics very soon. He'll get splints, some therapy, maybe surgery down the line.
-Dr. Fisher also thinks that Dylan has incontinence (#2). This is connected to the underdeveloped nervous system and would explain a lot! Good news is that most kids in Dylan's situation will outgrow this.
SO -- what is next!?!? The neurosurgeon and the oncologist have different points of view on add'l chemo. Well, this week Dylan has a big scan this week. It's performed by nuclear medicine and it's called an MIBG. On Wednesday, we'll go in so Dylan can be injected by an isotope - this will trace any neuroblastoma cells in his body. The following day, we'll get up early and head over to get admitted into the hospital. Dylan will have anesthesia and go in for the actual MIBG scan. Depending upon the quality of the scan and when the radiologist can get a review and report of the scan, we'll meet with the team on either Friday, 4/23 or Mon., 4/26 and we'll know whether or not Dylan is done with chemo and ready for surgery to resect the remaining tumor. If it turns out that Dylan needs two more cycles of chemo, then we'll start right away - either this Fri or Mon.
The big week is here. Let's pray that Dr. Fisher is on the mark - that Dylan doesn't need any more chemo and that he will have functioning legs and feet. Please pray for Dylan this week - let this be the week we get good news that Dylan has fought off the neuroblastoma, that there is no evidence of live cancerous tumor left in is body, that he doesn't have to forego any more chemo, that he is healthy and ready for the resection surgery and that he'll make it through the surgery with flying colors!!! And pray that through all of this, that Baby Dylan finds a way to be peaceful, strong and tolerant for all that still lays ahead of him.
Wednesday, April 14, 2004 0:17 AM CDT
The last 2.5 weeks have been so busy and continue to be "challenging".
TRANFUSIONS
You or I would think twice about having a blood transfusion. However, for Dylan, blood transfusion have become common and necessary. About a week and a half ago he needed platelets (this helps with blood clotting0. We were still in the hospital as an inpatient - and I decided to take him on a walk around the hospital, IV pole in tow. Well, after about 5 minutes he started getting a bloody nose! That was a sign he needed a transfusion. Interestingly, blood platelets are not red - they are gold in color.
Well, yesterday we went to the oncology clinic to get lab work. By the time we were driving home, the doctor call me on the cell phone to let me know that Dylan needed another transfusion - this time he needed packed red blood cells. I had a feeling he needed red cells because Dylan has been quite irritable and difficult to soothe. He acted the same way the last time he needed red cells. Adults needing red blood cells will feel very tired - babies, too, can be tired - but many babies are just super fussy.
So, we went back to the hospital today for our 12:30 appointment. Thankfully I didn't have Sasha with me - we didn't get a room until 3 PM because it was so busy! Dylan was the most irritable I've ever seen him all afternoon. We finally left the hospital at 7:30 PM. Let's hope the transfusion is all he needs and he's back to his happy, mellow self in the morning!
SCANS
OH! So, last week Dylan had an MRI. Great news -- the tumor has shrunk significantly! Dylan's fellow (this is the senior resident (doctor) who sees Dylan multiple times a week), Dr. Dennis Kuo, said that things are looking like Dylan is finished with chemo!! Of course, they can't say for sure until the other tests are done. Let's hope so!!
On Friday Dylan had a bone scan in nuclear medicine. He was supposed to be sedated for this scan and stay overnight in the hospital. Well, it turns out that a child with acid refulx -which Dylan has - cannot be sedated because he can throw up and choke on his vomit. Thank goodness the nurse caught this. Of course, I questioned why Dylan had been sedated in the past -- I guess this was an oversight with the previous scans!
Anyway... what needs to happen is that Dylan requires anesthesia so that an anesthesiologist remains with him the entire time of the procedure. Also, there will be personnel and equipment present so that they can clear his airway immediately should Dylan have a reflux episode.
OK - back to the bone scan on Friday.. so we tried what they call a "bundle and feed". I didn't feed Dylan for FOUR hours. Then, I fed him and they bundled him up super tight. He fell asleep and the bone scan was administered. While he did move around some, the radiologist said the scans were acceptable - blurry, but acceptable.
The next major scan Dylan has in on Apr 22 - this is the MIBG. We'll go to the hospital on April 21 for the isotope to be injected into Dylan. The next day we'll check in, get anesthesia and get the MIBG. This test will light up all the cancer cells in Dylan's body. Hopefully we'll get to go home on Apr 23. They may need to repeat the test on Apr 23 - so the procedure is tentatively scheduled just in case.
SUPPORT
Grandma Paculba has taken a leave of absence to help us out. We have no idea how we would have made it this far without her. Sasha spends many nights over at grandma and grandpa's because of early morning appointments and over night hospital stays. Dylan's appointments and treatments really consume almost our entire week - no kidding!
After two months away from her job, Grandma Paculba leaves for the Philppines to attend her high school reunion. She leaves on Apr 22. When she returns from her vacation, she returns to work.
So... Halmoni (Ken's mom) is heading over on Apr 21 to help us for a week. Good thing since we'll be spending the night at the hospital that week and someone needs to watch Sasha.
After that - let's hope Dylan's cleared for surgery and a clean bill of health. If he requires more appointments and treatment, we'll need to get creative with child care.
So that is it for now.... Thanks for checking in!!
Monday, April 5, 2004 11:21 PM Pacific
It has been a long 7 days. Dylan was supposed to leave the hospital on Thursday, April 1st after receiving his 4th round of chemo. It looks like he's coming out of the woods with the infection and will be discharged tomorrow.
Here's what's happened:
-Dylan did have a UTI (read previous journal for more details). After growing the cultures for a few days, we were told on Saturday that the specific bacteria was ecoli!! Of course, we all freaked out when he heard he had ecoli. When I finally hunted down a doctor, we were relieved to know that there are many types of ecoli - and the type that Dylan had wasn't the deadly "Jack in the Box" (found poisoning) kind.
-Every day of his life Dylan takes an antibiotic, Septra, to prevent infections. Turns out that ecoli is resistent to Septra (Murphy's Law).
-Dylan hasn't had any fevers since that scary 104.5 fever last week - thank goodness!
-He'll need to stay on IV antibiotics for the next 10 days. So, we have to have a home health nurse come to our home to administer the meds and teach us how to do it moving forward.
-In the next 14 days or so Dylan will have to have a test with urology to verify if he does have reflux of the urinary tract. If he does, I hope he grows out of it, doesn't get any more infections and doesn't require surgery. The attending oncologist said he wouldn't be surprised if Dylan does have this condition because of all the renal issues Dylan presented at birth.
ON THE UP SIDE
The moves are in motion to see if Dylan can put chemo behind him. This evening he had a very long MRI - they took an image of his entire spine and abdomen. This image will show us how much the tumor has shrunk and how much of it is dead tissue. I am sure his oncologist will let us know in the next few days how things are looking for the surgery to resect the tumor. However, before anything conclusive can be made, he still needs a bone scan, CAT scan and MIBG (nuclear medicine scan). I *think* all of these require sedation - and there is a law that anyone under 3 months old that goes under must be admitted overnight to be monitored. So... we'll be back at the hospital a lot because the team doesn't want Dylan to be sedated for consecutive days - so the scans will be spread out.
Anyway... Dylan has been feeling like his old self. He's a good sleeper and eater. I think the worst of the infection has passed. Let's pray that the worst of the cancer treatment has passed too!
Thursday, April 1, 2004 10:53 PM Pacific
Well, today was a hard day. I arrived at the hospital at 7:30 AM to relieve Ken from the night shift (and so Ken could go to work). Dylan continued to be fussy during the night and had a fever. Well, within one hour of my arrival he went from 99 to a fever of 104.5!
It was pretty scary. He was so miserable - moaning, crying, he wouldn't open his eyes, he was very jittery. Nothing I would do could soothe him. The anxiety and stress I experienced during his first week at the NICU quickly came back.
Fortunately, Tylenol did it's magic and brought the fever down; Benadryl helped calm him down.
Dylan had blood cultures taken to see if he has an infection. We need to determine if he has a virus or a bacterial infection. The signs are pointing to a bacterial infection. Which is something we've been afraid of because a bacterial infection can makes things go in the wrong direction. We'll know with more certainity in the next 24 hours as we wait to see what grows out of the blood cultures.
Here's what we know:
-The white counts are incredibly high. This is a sign that there is an infection- the white blood cells are increased to fight off the bacteria.
-The red blood cells are too low. Now I am not sure why they're low. But because they are, Dylan is getting another blood transfusion tonight.
-Dylan's urine test is showing some blood and signs of a urinary tract infection (UTI). We learned today that uncircumsized boys are more likely to get UTIs than those who are circumsized. In addition, Dylan may have some reflux with his urine - so not all of the urine may be coming out - thus causing the infection. Since Dylan was whisked away at birth, he never was circumsized. And now he cannot have the procedure until the chemo and the cancer is behind him. Of course, we were wondering if we hadn't cleaned him well enough - but his nurse practioner said this has nothing to do with how well he was cleaned.
-They will order some tests to see monitor his renal functions. With any baby so young - getting a UTI needs to be closely monitored to see if it spreads.
-Because this could spread to his blood and/or lungs, they are now monitoring Dylan's oxygen levels -- so now he's hoooked up to another monitor (this really brings back the NICU days).
Poor Dylan - as a mom, you come to recognize your baby's different sounds and cries. I had never heard this painful, moaning cry out of him before... his lower lip kept quivering.
Please pray for him. He needs strength (even his sucking to eat is weaker) to fight off the infection, to fight the tumor. He needs to know he's not alone - that so many people are pulling for him.
Wedd, Mar 31, 2004 11:41 PM Pacific
Last night Dylan received three different types of chemo. The stuff is strong. He was not a happy guy all night. He was fussy throughout the day today. He was more nauseous than he has been in the past.
Tonight and tomorrow Dylan receives just one type of chemo. Hopefully it won't be so hard on him. Poor guy. I just keep telling him to hang in there. And I remind him that he's not going through this alone - that all of us are here supporting him. I still sing him his songs - and they do seem to help a little - at least he can cal m down a little when it's music time.
I spoke with the scheduling department today. Dylan's scans will take place between April 12 - April 22. The scans often involve multiple departments - anesthesia/sedation, day hospital, radiology, nuclear medicine, etc. It takes some time to actual schedule everything because so many departments need to be coordinated.
Those two weeks will be very draining. First, just the anticipation of the results - has the tumor shrunk "enough"? Is the majority of the tumor dead tissue? Secondly, the days for the scans will be very long - showing up early for sedation or injections, the actual scan and then hanging out at the day hospital for observation to make sure the anesthesia has work off.
Once the scans are complete, we'll either be scheduling surgery to resect the tumor (please let it be so!) or being admitted for another round of chemo. If it turns out more chemo is needed - it'll be at least 2 more rounds. I know I may be setting myself up for a let down, but I am totally thinking that we are never going to be admitted for chemo again - I am so focused on spending my energy and thoughts to get the tumor removed ASAP.
Please take some time to help me out with this one - let's see the light at the end of the tunnel. Let this be Dylan's last chemo. Pray that this disease will disappear for good!
Tuesday, March 30, 2004 11:37 PM CST
Alright... Dylan's blood counts are in line, so he was admitted this evening for his fourth round of chemo. After waiting 6 hours for the lab results and a bed to become available on the oncology floor, our patience was rewarded with a private room. Yippee!
Dylan was really happy this evening - he was grinning from ear to ear! Maybe he knows this will be the last time he'll have to be admitted?!
I met with Dr. Twist and this is what will happen:
-In two weeks Dylan will get a number of scans: MRI, CAT and MIBG (nuclear medicine). The MIBG is taken over 2 days minimum, 3 days at the most.
-The scans will be compared to the baseline scans. The medical team will make a decision if the chemo has done everything it needs to do.
-If Dylan doesn't require any more chemo, then we schedule the surgery to resect the remaining tumor.
As soon as I know the dates of all the scans, I'll let you all know. Let's pull out the big guns on those dates and pray for positive results!!
Monday, March 29, 2004 5:12 PM CST
Hi Everyone...
Let's see what's new:
Dylan goes to the Children's Hospital at Stanford twice a week to get lab work done. Last week, his red blood count was low, so Dylan had to check into the "Day Hospital" at Stanford (the Day Hospital is for stays under 24 hours) to get a blood transfusion. Dylan tolerated the blood transfusion well.
Tomorrow (Tuesday), Dylan returns to the oncology clinic for an exam and lab work. As long as his blood counts are in line, Dylan will be admitted for his fourth (and final?) round of chemotherapy. He'll be there for three days, checking out on Thursday.
We have been spending a lot of our energy and prayers hoping that this is Dylan's FINAL round of chemo. While he has tolerated the chemo incredibly, every round takes its toll. Since the last round, Dylan hasn't looked as good - more tired looking, I guess is the best way to describe it. And, prior to his blood transfusion, Dylan was quite fussy. Perhaps that was his way of acting out since the blood count was low.
I am not sure when - but Dylan will need to get another MRI. Dr. Twist, Dylan's primary oncologist, will look at all the MRIs and determine if the chemo has shrunk the tumor as much as it can. Once Dr. Twist believes that the chemo has done everything it can, she will authorize surgery to resect the remaining tumor.
So, it goes without saying, that our prayer wish list includes:
-Let this be Dylan's last round of chemo. Hope that all of our prayers and positive thoughts, along with the chemo, have destroyed his tumor. Dylan is ready to start his life as a healthy child.
As soon as I know more about the next MRI and possible surgery, I'll let you know.
`
Monday, March 15, 2004 0:04 AM CST
Spring is here and we're loving it! Dylan took his first stroll along the nighborhood this afternoon. All six of us went - Ken, Sasha, the 2 dogs, Dylan and me (boy, no wonder we needed to get the minivan - there's a lot of us!).
There's plenty to update you on:
DYLAN'S CENTRAL LINE
You may recall from one of the earlier journal entries that Dylan had a "central line" inserted into his chest. A central line is a permanent tube that can distribute, or "push", medications in (such as chemo) and be used to draw blood, or "pull", for lab work.
Well, Dylan's central line has always been able to push fine; however, it has never been able to pull blood. Try after try, it just wouldn't work. An x-ray shows that the line is in the perfect spot -so it's been a source of frustration.
Why doesn't it work? Well, similar to the unsuccessful abdominal tap for which Dylan had surgery, the tube just pulls up against a wall - making it impossible for any blood to be drawn.
It's fairly important for the central line to pull because Dylan gets lab work done at least 2x/week. Because the line doesn't pull, we have to go to the outpatient lab at the childrens hospital where Dylan gets his heel pricked to give the blood sample. For the most part, Dylan handles the pricking fine, however, last Wednesday we waited 2 hours! Sometimes the lab just gets back up. Anyway, the bigger concern is for Dylan since most babies scream bloody murder whenever they have to get their heel pricked.
Anyway... I met with the head of pediatric surgery, Dr. Albanese, because the team was thinking that Dylan should get a new central line. Dr. Albanese told me that he would position the new line in a slightly different place to see if it would help, but honestly, it would take a little bit of luck to get a new one to work.
So... Ken and I decided to cancel the surgery because (1) we didn't have confidence in the design (since neither his abdominal tap or central line worked properly) and (2) because of the chance that Dylan may only need one more round of chemo - we figured we'd all live with Dylan being pricked if it were just one more round rather than put him through the anethesia and intubation, etc. that surgery requires.
Well,out of the blue, a few days after we cancelled the surgery, the central line started to pull!! We're so happy Dylan didn't have the surgery.
WHERE DO WE STAND?
On Friday Dylan had an MRI to see what's going on with his tumor. I was so proud of him. He sat through the hour-long series of scans without any sedation! I fed him and then they bundled him up. Dr. Twist, his onc, called Friday night and told us:
(1) The tumor is about 20 maller, or 2 cm less in one direction and 1cm less in the other;
(2) The tumor’s quality is changing from solid to more liquid — which means it is dying and becoming dead tissue;
(3) The tumor has shrunk away from the spinal area — there’s still some tumor in the canal – but because it has moved away from the spine, the surgeons feel better about going in now.
Dr. Twist is happy with this progress, but cannot say at this point whether Dylan will need more than one more round of chemo. So, after the next chemo in two weeks, he’ll get another MRI and we’ll see what lays ahead – a round or two more of chemo, or surgery to resect the remaining tumor. (PLEASE LET IT BE ONLY ONE MORE ROUND!!!)
GROWING BOY
As of Thursday, Dylan weighed 9lbs 14oz, so we got the go ahead to breastfeed almost exclusively. He gets 2 bottles/day that’s enriched with Enfamil with iron – just for extra calories. (Dylan's birthweight was 8lbs 14oz, after his 1st surgery he weighed 7lbs 11oz.)
WOUND CARE
For the past 2.5 weeks Dylan has had terrifying sores near his rectum. Poor guy – they were bloody at times. I guess the chemo makes one more apt to get sores and then it’s hard to heal. Airing him out and even using a hair dryer on cool setting was helping a little. A handful of drs and nurses saw these sores – but airing out was what they kept recommending. Then, on Thursday morning, I mentioned the sores to his nurse (just to see if she had any ideas) - and she called Wound Care. I had never heard of wound care specialist. But boy, what the lady gave us is working wonders! We spray this powder on the sores, then apply this no sting spray, dry, then repeat, then coat with heavy duty cream similar to Desitin. I just don’t know why his doctors and other nurses didn’t call Wound Care earlier. Oh well – good news is that he’s healing up. This goes to show that it helps to do research - I wish I had done more research so I could have asked for Wound Care earlier.
In general, Dylan is very easy going. He smiles a lot. And he really likes to be held. He still has some day/night confusion (he can sleep about 3 hours at a time during the day; however, between midnight – 4 AM, he can be up every hour).
Sasha is starting to say some words: baby, no, oh oh. And while she remains quite happy, she has shown some jealousy and clinginess — not too bad though.
So, the next couple of weeks we'll be laying low as Dylan's white count takes a dip. And, hopefully the count will perk back up in a couple of weeks so we can check into the hospital for round 4.
We appreciate the continued support we receive from our friends and family -- the cards, emails, voice messages, packages and meals. We've been on this journey for almost 7 weeks - but the support continues to be strong. Thank you for that - it really keeps us going!!
I am in awe of Dylan's progress. I can almost see the light at the end of the tunnel. Our family is in a great place right now. So, tonight, I have two things to ask:
(1) Pray for the other young children and their families who are fighting for their lives at the childrens hospital. You can't even start to imagine some of the problems the NICU babies have. And some of the children on the oncology floor have been patients for YEARS.
(2) Hug your child(ren) extra tight tonight!
I asked for Strength... And God gave me Difficulties to make me strong.
I asked for Wisdom... And God gave me Problems to solve.
I asked for Prosperity...And God gave me a Brain and Brawn to work.
I asked for Courage... And God gave me Danger to overcome.
I asked for Love... And God gave me Troubled people to help.
I asked for Favors... And God gave me opportunities.
I received nothing I wanted. I received everything I needed. (author unknown)
Sunday, March 7, 2004 7:20 PM CST
Well, it's been over two weeks since Dylan's last round of chemo - and it looks like he made it through the sensitive period without any infections (no fever) and without the need for a blood transfusion. WOO HOO! What a strong kid.
The biggest outward sign of Dylan's illness are these *awful* sores on his tushy. A common side effect to chemo is getting sores in your mouth and on your behind. Thank goodness Dylan hasn't developed any mouth sores. The sores on his behind, though, are fairly significant. I wouldn't even call it a rash - these are large, open sores - and obviously painful for him. These sores have been around for over two weeks now.
Dylan's home health nurse recommend that in addition to "airing" him out (letting him lay around without a diaper), that we use a hair dryer to really get that area dry - this will help the skin heal. With the setting on cool, this hair dryer thing seems to be helping. We've been doing it a couple of days now.
This week will be long. We have appointments early in the week for lab work, then we check in on Wednesday for round 3 of chemo. We'll be at the hospital through Friday night. Wednesday will be the longest day. It will start out going to the oncology clinic to have a full exam and lab work. We'll wait around for the blood test results, and as long as Dylan's blood counts are at the right place, he'll be admitted as a patient. However, he'll be admitted once a room is available. So, even though we have to be at the hospital at noon, we probably won't get a hospital room until 6 PM or 7PM. By the time there's a nursing shift change, and the doctor's orders are written, it'll be 10 PM when the chemo treatment is administered.
I asked other parents if it helps to arrive early -- hoping that we could get the first available room. However, these parents said arriving early is just a waste of time -- nothing seems to speed up the admission process.
The past two times he had chemo, Dylan had a private room. However, not all the rooms are private - so there's always a chance that we'll end up with a roommate. Though it would be nice to meet another family, I'm hoping for a private room. I'm sure it's nice for older children to have a roommate -- but having an infant for a roommate means interrupted sleep!
The weather this weekend has been fantastic, so Sasha and I were able to get out. She is doing great - dancing a lot, talking jibberish all the time and being a wiggle worm. In general, she is gentle with Dylan and quite curious.
OH! So, sometime this week, Dylan will have some scans. We'll be looking at how the tumor is reacting to the chemo. Based on the progress, Dr. Twist (Dylan's oncologist) will be able to tell us if Dylan will need four rounds of chemo or more. PLEASE LET IT BE ONLY FOUR!!! If you read previous journal entries, you'll see that the number of treatments Dylan needs is complicated by the fact that the tumor goes through his spine. Even so, there is a POSSIBILITY that Dylan could only need four -- which means after this week, he'd only have one more round to go.
That being said, you can bet the top of my prayer wish list is:
-- Please let Dylan have the least amount of chemotherapy. Let the chemo and the power of our prayers make this happen.
Dylan's ready to start a healthy and happy life - this little guy shouldn't have to suffer through any more rounds of chemo than necessary.
With this request, I am reminded to be patient and grateful that Dylan has been doing so well thus far. But it sure can't hurt to have hope for good news this week! Please keep this hope in your thoughts.
Tuesday, March 2, 2004 1:16 AM CST
Wow - I can't believe a week has already gone by since my last journal entry.
We've kept busy doing normal things with Dylan and Sasha. Well, as normal as you can be just staying home - avoiding any viruses!
Dylan has done so well so far! Knock on wood. He has a fantastic appetite (although he is a very slow eater) and shows no outward signs of infections.
For about 2 weeks after the chemo, Dylan needs shots of a medicine called GCSF. This stimulates the growth of white blood cells. This is pretty powerful stuff, I guess -- it costs $1700 for a 2 week supply. Thank goodness for insurance. Anyway, to my surprise, I cannot handle giving Dylan the shots in his thigh - fortunately, Ken seems to be a pro. I take care of Dylan's central line - called a Broviac. This is a "permanent" tube into his chest used to administer the chemotherapy. The central line is a big source of infection since it's an opening into the body. On a daily basis, I flush the line with Heparin. Twice a week, I change the injection cap. And I change the dressing on a weekly basis. It takes me almost 30 minutes to change the dressing. There's so much hand washing and steps involved to minimize any sort of contamination.
We went to the hospital today to get some lab work on his blood counts. Hopefully I won't hear anything from them -- that will mean things are looking "ok".
Tomorrow morning we're heading back to Palo Alto for a hearing test. Dylan didn't pass his newborn hearing test in one ear - so let's hope he passes tomorrow!
Tonight we started to receive meals from another Las Madres playgroup. We have one friend in the Almaden playgroup, Jayne. Jayne and I used to work together at Philips Semiconductor. And while we don't even know anyone else in that playgroup, Jayne received volunteers for the next 4 weeks to deliver dinners to us!
It is absolutely amazing how much people care. All this thoughtfulness really goes to show that people really want to help in anyway they can. I also think any mother, especially of a young child, can only sympathize and imagine what a shock this whole thing has been to our family.
Anyway, THANK YOU, JAYNE and the moms of the ALMADEN LAS MADRES playgroup!!!
For those regular readers of this journal - you are probably familiar with my prayer wishlist. RIght now, in addition to my regular list, please concentrate on:
-That the chemo and the power of positive thinking and prayers are doing such wonders that Dylan will need the least amount of chemotherapy and surgeries. Let us just ZAP that tumor into oblivion. Let Dylan receive NED (no evidence of disease) status ASAP!
I ask this not only so that we can continue as a "normal" family - but also because the more and more chemo that Dylan gets, the more his body gets beaten down... the more chances there can be for long-term affects such as loss of hearing, delayed cognitive development, etc.
Thank you for keeping up-to-date with us and for keeping Dylan's full recovery in your thoughts!!
Monday, February 23, 2004 10:13 PM CST
Well, thank goodness things have been pretty uneventful around here! Dylan finished up his three days of chemo on Saturday afternoon and came home that evening. Ken's sister, Rita, and her son, Cal, came up from San Diego for a quick visit. This was great for Sasha - since Cal is only 2 months younger - they are great playmates.
Life at home has been "normal" -- feedings every 2-3 hours, tons of dirty diapers, sleepless nights. How grateful I am to have some normalcy!
Even so, we will be traveling to Palo Alto a lot this week. Today, Dylan had an appointment with his regular preditrician. We will also be going to the oncology clinic at the Children's Hospital twice this week to get Dylan's blood counts.
About 7-10 days after chemo (so that would be Thursday this week), the blood counts really take a dive. Of special concern are specific white blood cells called neutrophils. Neutrophils help us fight infections. During the first round of chemo, Dylan's neutrophil count dipped so low, they could not be counted (this is common among chemo patients) - this is called neutropenia. When Dylan is neutropenic he has nothing left inside of him to fight of infections. So, we will be under careful watch for fevers, change in temperant, hydration, etc.
During round 1 of chemo, Dylan's platelet count also dropped (again, this is common). Platelets help us with blood clotting. Due to a low platelet count, Dylan had some "bruising" appear -- so, he had to have blood transfusions.
We'll see what happens this time around. Because Dylan is so senstive to infection, we have had to limit the number of visitors we have. This has been so hard because we know so many of you want to display your support and love to us. Yet, for Dylan's health, we have to reduce any chance for viral or bacteria infections as much as we can. This will actually be the hardest on Sasha. As our medical team has told us over and over, Dylan's biggest risk for infection is Sasha. As a toddler, Sasha is a germ magnet. Therefore, playgroup and other play time will be reduced to almost nothing. Fortunately, Sasha doesn't go to daycare - which is a prime place to catch colds, etc. We hope the weather warms up quickly - open air activities will be our safest bet. Walks in the stroller and trips to the park will be OK (but at this age, Sasha and her friends still love to put things in their mouths and share germs). The worst places for us to visit during this time are church, shopping malls, movie theatres and touching shopping carts at the grocery store! (You can imagine -- my hands are pretty dry from all the constant handwashing!!)
Overall, Dylan has been handling the chemo very well. For a couple days, we was moaning a little and was a little more fussy than usual-- but he hasn't had much nausea. In fact, he has a good apetite. I am not sure if I mentioned this earlier - but Dylan is eating breastmilk from a bottle for two reasons: 1) We need to measure how much he's taking in and 2) We are enriching the breastmilk with iron fortified formula to give him extra calories -- we're trying to bulk him up as much as possible as we fear his appetite may decrease during all these treatments.
On Thursday night we had a very long conversation with Dylan's oncologist, Dr. Clare Twist. This was the first time Ken and I had a sit-down meeting with her. Dr. Twist is Stanford's neuroblastoma (NB) specialist. We learned a little more about the disease and the treatments. I have heard very positive feedback on Dr. Twist from other NB families.
Once Dylan is finished up with chemo, he will most likely have a surgery to scoop up any left over tumor that wasn't zapped by the chemo. Because Dylan's tumor crosses his midsection and goes through his spine, it is most likely we will need to go through 8 rounds of chemo. We need to make sure that as much -if not all- of the tumor is removed from the spinal area (well, from his entire body, really!). It is highly undesirable to perform surgery in the spinal area to remove any left over tumor. To do so would mean having to take some of Dylan's spine apart. This procedure has long-term consequences that will very likely affect Dylan's quality of life. Therefore, more chemo is the lesser of the evils.
So... with all this in mind, here's my wish list of prayers:
1) That Dylan continues to handle his treatments well, that he continues to grow strong and that he is as comfortable as possible.
2) That the tumor shrinks and disappears - the sooner the better! While we are prepared for many chemo treatments, we hope and pray for a speedy recovery, thus reducing the amount of chemo Dylan needs.
3) That when Dylan's blood counts drop, he is protected from infections. Also, that he not need any blood transfusions.
4) That our family continue to find strength - so that we are strong in support and love for our children, Sasha and Dylan, and each other.
FYI: Dylan's patron saint is St. Aldegundis; she is a patron saint for cancer patients and childhood diseases.
St. Peregrine Laziosi is the patron saint for cancer patients.
Wednesday, February 18, 2004 9:49 PM CST
Well, what a joy the past 24 hours have been. A dose of "normalcy" has done us some good.
We were discharged from the hospital on Tuesday afternoon - after Dylan proved he had a healthy appetite and did not require any more nutrition via IV. Getting him to eat has been tricky since he is still weaning off the morphine. I have to pay very close attention for the 30 minutes or so that he's very alert -- then I get him to eat. Otherwise, he is zonked out from the drugs. Friday morning at 3 AM is his last dose - then he'll have kicked the habit!
Anyway... so we've been home for a little over 24 hours now. We return tomorrow for round 2 of chemo. We'll be there as an in-patient through Saturday afternoon.
Here are some highlights I neglected to mention over the past week:
-There are a number of scans that contribute to the overall diagnosis/tracking of the neuroblastoma tumor. These scans include bone, bone marrow, CAT scan, and MIBG. The MIBG scan is performed by nuclear medicine and is considered the most accurate of all the scans. Basically, Dylan takes some oral medication for a couple of days, has the scan and wherever the cancer is present -- the nuclear tracers light up. The fantastic news is that Dylan's MIBG scan came out NEGATIVE for cancer in the bones!!! If you recall, this is the difference between stage 3 and 4, or 85% vs 75% survival rate.
-One of the tests performed was to check the "biology" of the tumor cells. What this means for us is finding out if the cells are agressive or not. More good news -- the biology of Dylan's neuroblastoma cells are non-agressive.
-Dylan's hair started to fall out about a week ago. :-( His little hats and pillows are filled with his fine, dark hair.
So... here we go for round 2. Hopefully it's round 2 out of 4 (remember, we're prepared that there may need to be 8 rounds, 4 rounds is the minimum). All of you out there - our family and friends... and friends of friends... THANK YOU for getting us this far. I attribute so much of Dylan's incredible progress to all of your prayers, positive thinking and support. Please continue to keep Dylan's health and total recovery in your hearts and thoughts. (I could use some positive energy to give me some strength - I have been so tired this week.) :-)
Tuesday, February 17, 2004 9:46 AM CST
Great news! Dylan is coming home today for two days!! We'll return to the children's hospital on Thursday for his next round of chemo. We should be there as an in-patient through Sunday.
I'll provide more details in my next entry.
Sunday, February 15, 2004 0:27 AM CST
Friday and Saturday proved to be good for Dylan. So good in fact, that Dylan was transferred from the neonatal intensive care unit (NICU) to the pediatric oncology floor.
This is quite an accomplishment because a number of things had to fall into place to graduate from the NICU: abdominal fluid needed to be under control, eating breast milk, breathing on own, no need for constant blood work...
The oncology room is certainly an upgrade. Dylan has a large, private, corner room. It has a TV/VCR and full bath. The children on the floor range from 0-22 yrs.
The downside to the oncology area is that we are much more independent. No longer requiring constant care, Dylan doesn't have a private nurse all to himself (each nurse has 3 patients). Being in a private room, rather than the NICU nursery, also means that it is very hard to hear him cry from the nurses station. And for some weird reason, the monitor readings do not show at the nurses station (heart rate, oxygenation, blood pressure). All this means that Dylan pretty much requires a family member with him 24 hours/day. All this "independence" comes at a price. In the NICU, even if Dylan's nurse wasn't around, someone would know if a monitor was going off or if he was crying his head off.
So, while we can be happy for Dylan's progress, this new scenario is stressing me out. Just to make sure I understood the recommendation of having a parent/family member with him 24 hours/day -- I asked 3 separate people. What do other families do with very young children? Sure enough, aunts, grandparents and parents are there around the clock.
Sure, the hospital staff is still responsible for him... but I just can't imagine leaving him there by himself knowing that he could be crying for 15 minutes before anyone even noticed.
Our friends, Jon and Kate, stopped by just as we were settling into the oncology room. They were there to hear our introduction to independence (given by Dylan's new nurse). As new parents themselves, they shared my concern about leaving Dylan alone.
Now, more than ever, we are determined to get him home. We'll have to speak with the team of doctors about when this may happen. Perhaps after his next round of chemo - which is schedule for Feb 21.
So, tonight, in addition to praying for Dylan's continued progress and good health, please pray for our family! I am not sure how we are going to manage having someone there 24 hours/day.
Friday, February 13, 2004 3:40 AM CST
Thursday was a big day for Dylan
1) He turned 2 weeks old and ate his first meal ever at 2 PM. He had 5 cc of breastmilk from a bottle (about 1 teaspoon). He is strong enough to suck from the bottle - this means he doesn't need to be tube fed! He is being fed every 3 hours. As long as he does well for 24 hours, his feedings will increase. Once they no longer have to measure how much he is drinking, he can breastfeed.
2) Keep your fingers crossed -- his abdomen has been behaving! So, the surgurical team decided to remove his abdominal tap. One less open source for bacterial infection. Prayers are being answered, guys!
3) The continuous morphine drip was discontinued today. Poor Dylan went cold turkey and it was very hard the first two hours. He still receives some morphine - it's just not constantly administered. Rather, it is given to him as needed via IV.
4) HIs kidneys are behaving like a "normal" baby his age. This means the waste output from the kidneys have calmed down and the urology team is feeling good.
What a momentous day for my son! He is so strong. Yippee Dylan!!
Sorry this entry is so short ... but these days are so long.
But I can't go without thanking you again for all your positive thoughts and prayers. I am left to believe that prayers are very powerful.
Please continue to pray for Dylan's continued progress, for the abdonimal fluid to remain under control, for his overall comfort, for the tumor to shrink, for his full recovery and for the well-being (mentally, emotionally, physically) of our family - especially Sasha (she is so smart, I wonder what's going through her head).
Wednesday, February 11, 2004 11:54 PM Pacific
Wednesday was a fairly good day for Dylan. He moaned most of today and up until Ken left tonight around 9 pm. We're trying not to overdo it on the morphine -- but there were a couple of times today when he really let out a painful scream. Maybe the chemo's doing its work.
Dylan's nurse today (Charleen) said there's a old nurses tale: the sicker the kid got from the chemo, the more likely he was to go into remission. No scientific evidence, just nurses' tales from the oncology ward.
The nurse is such an important part of the care. We haven't found one for the night shift that we've fallen in love with -- hopefully we'll find someone and convince her to sign up as Dylan's primary nurse.
Dylan has a bunch of nurses on the day shift that have signed up to be his primary nurse. Basically that means he's popular. And these specific nurses have requested that he be the only child they take care of when they are working. The benefit for us as parents is that we can rest a little better knowing that someone familiar is caring for our son.
So... Dylan's abdominal drain for which he had surgery on Saturday was removed tonight. It just wasn't working anymore. That makes us so frustrated that Dylan went under anesthesia and had a surgery that wasn't successful. We PRAY that the tap which was put in yesterday continues to work (this one was inserted at bedside -- no surgery required).
Grandma & Grandpa Paculba both visited today. Dylan was super alert for Grandma's visit. This was a big treat since Grandma had never seen Dylan open his eyes before.
Sadly, we are saying good-bye to Halmoni (aka Ken's mom, Yumi) on Thursday. She has spent the past week with us. What a help she has been in carng for Sasha and for us. We are sure she will come to visit us often - but tomorrow she returns to Texas. It's great that she and Sasha have spent so much time together - they are great buddies.
I have been busy trying to figure out insurance "stuff" -- getting input from other neuroblastoma families via an online support group, the nurses, one of the oncologists and the financial advisor at Stanford. I am pretty sure I have things figured out to make the best decision based on what we know today -- I just hope I haven't left any stone unturned. (One thing I will pass along to you: Check if your insurance has a lifetime maximum benefit -- most HMOs have an unlimited amount; however, PPOs usually have limits at $1, $2, $5 or $6 million (varies by emplyer) - at the rate we are going, our bills will exceed $1 million. Keep this in mind next time you choose insurance -- $1 million does not go far in a serious case).
So, reading about other neuroblastoma families and their experiences is a mixed blessing. It's great to learn about treatments, the known specialists in the US, how to cope, etc. On the other hand, the vast majority of the cases are children over 1 yr of age -- and these patients have much worse prognoses than Dylan. It is very hard to find other families with infant neuroblastoma. In any case, it is so emotionally draining to read their stories.
It is starting to really sink in that my son has cancer - and that there is a long, scary road that is ahead. I have been in super focused mode for the past two weeks... the gravity of this challenge is starting to weigh. Like I said in yesterday's entry: the good days with Dylan will help me get through the tough days.
I must tell you that I expressed my concerns to one of the oncologists, Dr. Koonunan (sp?), and she, along with the others on Dylan's medical team, reminded me how positive Dylan's outlook is. She has every reason to believe we will beat this thing -- without needing to have a bone marrow transplant, without having to travel outside of California, without having to try experimental treatments. Of course, there are no promises. Yet, I need to remind myself that Dylan's case has so much promise and that his chances for survival are 75% or better.
With that, I warn you not to get too caught up on some of these web sites that you may be visiting. Again, the prognosis for kids over 1 yr. is so low -- maybe averaging 20-30% depending upon certain factors. And it is those over 1 yr that typically require bone marrow transplants, that find themselves travelling around the country for treatments, that end up resorting to experimental treatments.
Thanks again for keeping up-to-date with Dylan and our family. Here's our wish list for prayers:
(1) Please pray that the free-flowing liquid in Dylan's abdominal area decreases and eventually disappears.
(2) Please pray that the chemo is working and that the tumor inside of Dylan is shrinking into non-existence.
(3) Please pray for Dylan's general comfort. It is hard to be poked, to have IVs, to have surgery, to go through chemo and to not be at home with your mom, dad & sister.
Tuesday, February 10, 2004 10:20 PM CST
What a great day it was for Dylan (and for me)!
First, I must say that prayers do come true. In yesterday's journal entry, I asked that you all pray specifically for Dylan's abdominal fluid to decrease.
Well, I called the hospital to get an update and Dylan's abdomen actually got larger -- it usually measures around 38 cm, but it jumped to 42 cm overnight.
However, when I arrived this morning, his abdomen was looking sooo good. One of the surgeon's visited and inserted a small tap at Dylan's bedside and, boy, did his abdomen drain!! YIPEE!! Prayers do come true!!!
It turns out that the drain from Saturday's surgery is getting blocked by some tissues... and it just isn't performing to our satisfaction. Of course, we regret that Dylan had this surgery since it seems to have been unsuccessful.
However, right now, we have something that is working. Let's keep our fingers crossed that this solution keeps on working!!
So... with the Buddha Belly shrinking, Dylan is feeling so much better. He was so alert today. It was such a treat to see him looking at me. We sung plenty of songs while listening to his cassette tapes.
The other good news is that Charleen was Dylan's nurse today from 7AM-7PM. Charleen is super at her job. Ken and I love her - I even called him at work just to let him know Dylan was being cared by Charleen. One of our other favorite nurses, Nicole, is on her days off for most of this week - so it was nice to have a familiar nurse who is so competent.
Because Dylan was doing so well today, Charleen decided he could handle some cuddle time. SO EXCITING! This is the second time I got to hold him. What a special time we had. We unhooked him from all this wires and IVs, wrapped him up in a blanket like a burrito and spent about 10 minutes together. What a highlight to an already great day.
And, Dylan was weighed on the scale today. He hasn't been comfortable enough for us to pick him up and put him on a scale since he arrived at Stanford. Even with the weight of some of his wires - he now weights 7lbs 11oz. So, even though it's hard to say with any certainty, I think this is closer to his real birth weight -- without all that liquid in his belly. (On his first surgery, on his 3rd day, they removed 10 oz of fluid... that's why I think this is closer to his truer weight.)
Guys, I have to ask you to keep praying for this tough guy. I am so encouraged by today. I know that some days will be better than others, but good days like today will surely get us through the tough ones.
Tuesday, February 10, 2004 0:26 AM CST
Today was fairly low key.
The drain in the abdomen has been working just OK. I met with the surgeons while they were on rounds, as well as the neonatology attending, and all said that the drain is working to their satisfaction. We were just thinking the drain would flow the liquid out and his abdomen would shrink in size. Rather, the drain works here and there - depending on Dylan's position and if the tube is bumping up against some intestines. So, it's a dance...trying to move little Dylan just so to get some liquid to flow out.
Gotta get that abdominal fluid under control. URGH.
Interesting development -- the conversation has started about giving Dylan breastmilk. Oncology and surgery feel that he's ready; neonatology doesn't want to rush it. I'm glad the entire team has started this discussion. I'm hopeful we'll reach this milestone this week.
There is a new neonatology attending (kinda like the head baby doctor on duty in the NICU) this week and our familiar nurses are either on their days off or vacation. It's hard to make this transition to new caregivers. You get attached to your doctors and nurses - and become accustomed to their style.
That being said, we are more ready to leave the NICU and get over to the pediatric oncology area. We need to be around the cancer specialists. Again, we've got to get this abdominal fluid under control to help make this happen so that Dylan no longer needs intensive care.
So, if you're looking for something specific to pray for -- pray for that fluid to decrease AND pray for the tumor to shrink -- that, too, will help the size of his abdomen shrink. ;-)
Monday, February 9, 2004 1:28 AM CST
It's been a long day. I will make this short. I know so many of you read the entries daily - thank you for keeping up with us!
Dylan had surgery yesterday. They inserted a tube in his abdomen so that the abdominal fluids could be drained. However, this tube just doesn't seem to be working very well and his belly is still on the big side. This is frustrating. We know there are no gaurantees with surgery - but we certainly need this to work.
Good news -- Dylan is breathing on his own! They took out the intubation tube this morning. This means we can hear him make noises and even cry!! What a treat. Poor thing - his vocal cords are recovering - but in a few days, I am sure he will be louder.
There's some speculation that may be able to breastfeed, or at least have the milk I've been pumping, later in the week. Yippee! This boy needs some nutritive calories. He's been surviving off his IVs of sugar water and lipids. He's still rooting -- so he's looking for something to eat. How I can't wait for that!!
With breathing on his own and eating - comes a move. Dylan will be moved from the NICU to the pediatric oncology wing. This is a "scary" move for us -- a positive one, though. It will be good to be in constant contact with the oncology nurses and doctors. However, they are not neonatologists -- and we have to remember that Dylan is still an infant. Also on the positives is that he'll most likely get his own room and we can even sleep in his room. This is also helpful once we start breastfeeding - for privacy. Since I am on the the topic of nursing - I have to tell you that the hospital has a nice perk to encourage moms to keep on pumping/nurse. As long as you pump/nurse, the hospital provides you with meals. If I wanted, they would deliver me breakfast, lunch and dinner every day. I usually just have lunch (as long as I remember to sign up the day before!). And it's pretty good food.
Anyway, all of this is down the line -- even if just days away -- we've learned so much can happen in just one week. I still can't believe Dylan is only 10 days old. It seems like longer.
Thanks for your continued emails and prayers and calls. Some people have commented on how I can take the time for these entries and respond to emails. Really, I am such a heavy Internet and e-mail user, that I enjoy doing this. It is therpeutic -- and it could be helpful for other families down the line -- families who have a neuroblastoma baby.
Anyway, I LOVE getting all of your emails and guest book entries. I can't always take your phone calls -- but it gives me strength to know you are keeping Dylan close to your heart and in your thoughts.
Through our playgroup, I have made contact with a couple of other neuroblastoma families - one, in fact, whose daughter was treated at Stanford. Las Madres (our playgroup) is a wonderful association and such a resourceful network of women! We continue to get their support through meals and rides and just good ole tender loving care. In fact, some other Las Madres neighborhood playgroups other than our own (in other parts of the South Bay, and other birth years) have members that have volunteered to deliver us meals just to keep the support coming! How cool is that?
Saturday, February 7, 2004 5:51 PM CST
...Another entry from the hospital
Dylan started his day in surgery. The team decided to go ahead and put that tap into his abdomen to drain the liquid that makes his belly area bulge. Everything went as expected with the surgery. Phew!
Minimizing that balloon belly sure makes him look better and function better. Even while he's sleeping, he kicks BOTH legs. Less pressure from the liquid means less pressure on his spine and other areas, which means less swelling and increased ability to wiggle around.
Nonetheless, he continues to be in obvious pain at times. The morphine drip continues. He was quite aggitated last night and needed some extra morphine dosages -- but he has been fairly calm for most of today.
OH! We changed rooms today. We're no longer in room 4. Dylan is now in a "reverse isolation" room in NICU#2. Reverse isolation means that he needs to be protected from all of our germs. So, when Ken and I visit him, we need to wash our hands for 2-4 minutes and wear masks.
Two days ago Dylan's white cell count was 17,000. This morning it was 2,700. This afternoon it is now under 1,000. This is quite, quite low -- yet, not a surprise. It is a result of the chemo. The chemo kills fast-growing cells such as cancer -- but this also includes the cells that fight infection, known as white blood cells.
Dylan is given a daily shot that specifically helps with his white blood cell production. Once he is able to go home, I will need to administer these daily shots.
We are seeing that the chemo really puts you on a roller coaster. And treating Dylan's various conditions is quite a balancing act.
Still, Dylan is receiving top-notch care. He needs so much attention, he has one nurse all to himself during every shift. And, boy, he sure keeps them busy! The nurse is constantly giving him different liquids via IV, taking blood cultures, etc.
That's the update from here. Tomorrow is a "Sasha Day". We're hoping our sunny weather continues so we can take her to the park and have some fun. We are so lucky that both Grandmothers are taking such good care of Sasha. Yet, it is clear she misses her mom and dad! We surely miss her.
Friday, February 6, 2004 5:39 PM CST
...Entry from the hospital (they have a computer with Internet access for the families)
Dylan was baptized today at 1 PM. It was a nice service. For something such as this, they make an exception for guests. So, instead of the two we are usually limited to, we had 8 people in attendance: Father Chris, Ken, Sasha, Grandma & Grandpa Paculba, Grandma Ryu, God Mother Diane and me.
I will post the pictures when I get home -- but we were able to give him a little sponge bath to get him cleaned up for his special event. Then, we dressed him up with little booties, a bonnet and a white blanket.
The results from yesterday's bone scan are non-conclusive. There is something showing up around his eyes and in his back -- it *may* be that the cancer has spread to his bones. Or, as Dr. Twist (the neuroblastoma specialist) said, they may be over-reading the scan. Dylan did have a bone marrow sample (see previous journal entries) - which came out negative for cancer; however, to be sure, we also needed to get a sample of the actual bone, and they were not successful at obtaining a bone sample. Just looking at the bone marrow results could give us a "false negative".
Anyway, because yesterday's bone scan is showing "something" - Dylan is officially classified as a Stage 4 cancer patient -- from what I understand,the stages range from 1 - 4, 4 being the worst.
Even with this news, Dylan's treatments remain the same. It will mean that he will definitely need 8 treatments of chemo (there was a chance he could get away with 4 treatments). Sadly, *if* the cancer really is in his bones, his chance of survival drops from 85% to 75%. :-(
Obviously, this is not what we wanted to hear.
We just have to hope that Dr. Twist's notion is correct - and that the team is being over cautious.
On to other things -- Dylan's body is so dynamic. Things are changing and shaking around everyday. Yesterday, the surgery team alleviated some of the fluid in his abdomen. As a result, Dylan's urine output has greatly increased - a good thing. The relief of less pressure let his kidneys get on track and do their job. Yet, the incision from Dylan's biospy surgery has started to ooze liquid - at times, oozing like a fountain. So, we are waiting for a meeting of the minds between surgery, neonatology and oncology. They may decide to perform surgery to put in a line that could act as a faucet -- so that fluid could be released from Dylan's abdomen on a regular basis. The risk with this is that it will be another site for potential infection. With a weak immune system, we have to make this decision carefully - he already has the "main line" in his chest for the chemo treatment, and another line acting as an IV. This abdominal "faucet" would be a third open area of exposure.
Oh - because of all this liquid oozing out of his abdominal incision, it was causing Dylan plenty of pain. So, the surgery team decided it would be in his best interest to have a morphine drip instead of receiving doses of morphine here and there.
I am glad that they are doing what they can to manage his pain. The morphine is not taking the pain away - because there are times you see him cry and get agitated and see his blood pressure rise - but the morphine definitely makes the pain more manageable.
Because Dylan really isn't moving around, it is important that he be repositioned every few hours - so as to avoid any sort of adema and bed sores. The physical therapist visited him today. Dylan may get some for his feet to help preserve his range of motion.
It looks like I'm getting a sore throat - so I'm not at Dylan's bedside. I don't want him to get sick - so I am hanging outside of his room so his nurse and the team of doctors can update me regularly. (sigh)
Friday, February 6, 2004 3:36 AM CST
These long days are catching up with us. So I'll make this short.
No surprises with Dylan on Thursday. He's stable and doing OK. His blood counts are a little off - but nothing surprising, like I said. The surgeons decided to drain a little bit out of his abdomen today. They did the procedure after I left for the afternoon, however, Ken was with Dylan tonight and said Dylan is more comfortable.
All that liquid in his abdomen affects his renal functions and even his breathing. So, getting rid of a little bit to make him comfortable translates into an increase in urine output and easier breathing since his lungs aren't surrounded by so much liquid.
Dylan continues to be responsive by opening up his eyes here and there - which continues to be the highlight of my day. He always seems to open up his eyes when I start to say good-bye! So, of course, I don't leave right away.
We've arranged for one of our parish priests to come out today, Friday, at 1 PM to baptize Dylan at his bedside. There will be an exception made - and we will be allowed 6 visitors into the NICU. So, think a special thought for him as he receives the sacrament of baptism and hum his favorite song "This Little Light of Mine".
Wednesday, February 4, 2004 8:39 PM CST
When I arrived at the hospital this morning, Dylan was pretty busy. He was getting a blood transfusion... the radiology technician was there to take an ultrasound... a surgeon was checking him out.
What a scene ... it threw me off a little to see so much action around his bassinet. So, I waited outside to let the experts do their jobs.
Fortunately, one of Dylan's oncologists came out to talk with me. Apparently, it is common to have a few "dicey" days after having chemo. Things will shift - like his blood count - and the team will need to assess and treat appropriately.
I guess one way to look at this is that the chemo has already started to do its job. So, in fact, we would be even more concerned if Dylan didn't start to feel bad.
Melodie, Dylan's nurse today, told me that it feels like you have the flu after you have chemo - you feel achey and uncomfortable. It was obvious to me he was in discomfort. He grimaced, wrinkled his nose, opened up his mouth as if he were to cry (but no sounds came out - I guess because he's intubated), wiggled around. The other way to tell that he's in pain is that his blood pressure would rise and he can't calm himself down. So, because of this discomfort, Dylan received regular dosages of morphine throughout the day.
His abdomen is pretty big again. Boo. However, this isn't unexpected. The surgeons are discussing draining just a little bit out to provide him more comfort. However, we don't want to completely drain it - because that would be a lot of fluid fluctations in his body - which is not good.
It's very hard to watch your child experience pain. Especially someone so little who can't even get out a cry. Dylan has demonstrated his strength today -- he hung in there!
Tuesday, February 3, 2004 9:51 PM CST
So, as I mentioned in my last entry Dylan is getting a handful of baseline tests done. Today he got his shot of morphine to keep him comfy and headed out for his cat scan.
Super news with the cat scan results - the neuroblastoma has NOT spread to his lungs. This is absolutely wonderful news since the cancer has surrounded part of his spine, there was concern it would start heading for the lungs.
Today, Dylan had his third and final day of chemo (we start again in three weeks). He has handled the chemo extraordinarily well. He's not wretching (he can't really vomit since he isn't eating anything). I guess in the last 5-10 years there are incredible new drugs that help control the vomitting often associated with chemo.
Dylan has been getting puffy - it's adema from not moving so much, etc. So, they gave him a diuretic - and within a couple of hours, he lost all this puffiness in his face and other parts of his body. He looks so much better without a double chin.
The nurses that take care of Dylan have been super. Yesterday, Charlene took care of him. She used to work in Seattle with pediatric cancer patients and has even had a couple of other neuroblastoma patients. Today, Melodie took care of Dylan. Both nurses are gentle, upbeat and great at explaining things. I've learned a lot from them -- and they don't seem to mind when I forget things and have to ask twice, or three times.
Sasha and Grandpa & Grandma Paculba visited today. And two of our playgroup friends, Christina & Dawn also came to meet with Dylan and have lunch.
The highlight of my day -- I was finishing up singing some songs to him and saying goodbye. He opened his eyes up and blinked a lot. This is only the 2nd time I've seen his eyes. Then, he flashed me the biggest smile yet. Who can resist that? I teared up with joy.
Monday, February 2, 2004 11:50 PM CST
Today is the second day of Dylan's chemotherapy. Whenever he gets chemo, it will be three days in a row. The chemo will be repeated every three weeks. The protocol is to start with 4 treatments -- so that is over a twelve week period (3 weeks x 4 treatments).
Some kids are able to have these 4 treatments and be done with chemo. However, many need to have four more. So, realistically, we are looking at Dylan getting chemo over the next 24 weeks.
Dylan has had a couple of good days:
- Dylan is moving and wiggling! Ken and I started to sing to Dylan on Sunday and he actually opened his eyes & kicked his legs! Leg movement is especially remarkable because the cancer has surrounded part of his spine. We get so excited whenever he moves his legs.
- Dylan smiles at us! It is so clear that he knows we are there. When we talk or sing to him, he shoots us this cute smile. What a charmer! We sing songs from our Music Together class that Sasha attends. His favorites are "Apples and Cherries, Peaches, Blueberries" and "This Little Light of Mine".
- Dylan is making a lot of urine. This is so important because we want his bladder to flush out stuff - especially during chemo. One his chemo meds is especially tough on his bladder - so we want to minimize any chances of bladder damage.
- Dylan is stable. He has strong lungs and his blood pressure is steady.
- Dylan is not as swollen. His left leg was pretty swollen at first - most probably because the abdominal tumor was pressing up against some of his veins and not allowing for proper circulation.
We are encouraged by all of this and pray that this chemo shrinks that tumor! The doctors are doing a bunch of baseline tests this week (cat scans, tumor scans, hearing tests, bone scans) - that way we can see how affective the treatments are. The doctors say we should be able to measure any progress in about a week. Oh - one his his chemo medications can affect his hearing - so we need to track if he has any hearing loss.
Our support system
We are so lucky to have such a great support system. Our playgroups are so incredible! They've started providing us with dinners - which makes a huge difference. After spending an entire day at the hospital, and trying to recover from the c-section, dinner is the last thing I want to prepare! It is very heart warming to come home to a home cooked meal - knowing it was made with tender loving care from a friend.
I am taking pain medications for the c-section, so I cannot drive myself to the hospital. Lucky me - my friends have organized a list of volunteers to drive me to Stanford. One less thing to worry about.
Our mother's helper, Jessie, is another blessing. She takes such good care of Sasha. She is a team player and helps wherever she can. Thank goodness for Jessie!
Our parents have been so involved. Sasha has spent the last 7 days and nights with Grandma and Grandpa Paculba. Sasha's halmoni (that's Korean for grandmother) is flying in from Houston tomorrow to start taking care of Sasha (and us!).
We plan to baptize Dylan sometime this weekend. Thanks to Jennifer Mikwee for getting info from St. Mary's to me.
The incredible, creative gestures. Some friends even volunteered to clean our house and do gardening. Even if we don't take them up on their offers -- it truly touches our hearts to receive such specific ideas on how to alleviate the weight of daily chores.
Because this whole thing took us unexpectedly, I didn't even had time to be shy about asking for help. Sometimes our pride keeps us from asking for help -- but I sure am glad I have asked and asked and asked. I am incredibly grateful to have wonderful friends and family. Dylan, especially, is benefitting from all of this support and love.
January 31, 2004
What a treat it was to come home tonight – to a porch full of love. Thank you for the flowers and other goodies, as well as thoughtful emails and calls!
Today was a good day. We met with the oncologist. Here are the highlights:
Dylan has a tumor classified as a neuroblastoma (sp?). If you had to choose a cancer for a child, this would be the one because it is very treatable with chemo. Although Dylan’s cancer would be classified as stage 3 or 4 (which is very far along), he has about an 85% chance of survival. I haven’t even had a chance to do any research, but was told that neuroblastomas in those less than 1 year have considerably better prognosis than for those over 1 year old.
Dylan went into surgery today for about three hours. He had plenty of things done. (1) They drained 10 oz of liquid from his abdomen. He looks so much better w/o that big Buddha belly! (2) They got samples of the tumor for biopsy (3) They were trying to get bone and bone marrow samples — but because he is sooo small, it wasn’t very successful (4) They inserted a “main line” into his chest where some heavy meds can be administered. The surgery went as well as can be expected. He was very stable.
Late tonight Dylan is scheduled to get his first chemo treatment. He’ll have three days of chemo. The plan right now is to have chemo every three weeks — getting 8 sets of chemo treatments.
I don’t want to get ahead of myself — but if this goes as the oncologist thinks – Dylan may be able to come home in three weeks. We will be trained how to care for all his tubes, meds, etc. We will need to be very careful about exposure to viruses. And he will be extra susceptible to bacteria because of the tube in his chest – it’s common to get bacterial infections through this process – so those will be scary times for us ahead.
Right now the urologist isn’t seeing any reasons for his involvement. This means the kidney & bladder issues are getting under control. Let’s pray this continues – the less specialists Dylan needs, the better.
Today was good because we have a much better understanding of what is going on inside his body and we are in contact with doctors who are very specialized. It helps to know the realistic, hard facts – the mortality rate, the pronounced stage the cancer is in, that if we didn’t act fast, Dylan could suffer neurological damage – in his case, the ability to walk would be questionable.
Positives for us to keep in mind: Dylan’s brain and heart look super, he can urinate and pass stool, he was born a week early, he was delivered by c-section (less trauma for him).
Dylan is still is being fed through IV. I am trying to pump in his presence, in hopes that this will help with my milk production and let down. This is why I needed more nursing shirts. Even though I can pump behind a curtain, next to the bassinet, there are a ton of nurses and doctors coming in and out — the nursing shirts are more discreet to pump in. Thanks for all the loaners!!
I am pooped – so off to bed I go. I am amazed at how quickly things were organized by the group... A million heartfelt thank yous from our family.
January 31, 2004
With incredible love, we welcomed our son, Dylan Augustus on Thursday, January 29th at 8:05 AM. He is a handsome little guy, weighing in at 8 lbs 14 oz, stretching 20.5 in.
Dylan was born with an unusually large belly called a distended abdomen. He was transferred on Thursday from Los Gatos Community Hospital, where he was born, to Good Samaritan Hospital just down the street – which has a level 4 NICU.
But it seems as if we just can’t catch a break. After a day and a half, nothing definitive could be said about his condition. It turns out that his case was way over Good Sam’s capabilities, and Dylan was transported to Stanford’s Children’s Hospital on Friday night. Once I knew he had to move AGAIN, I checked out of Community asap so I could be with him. It was very scary to hear that a high-level nursery such as Good Sam’s wasn’t able to handle his case.
He has a very large growth of some sort in his abdomen, possibly a hole in his stomach, some kidney issues, etc. There are various types of cancer - and it doesn’t look like Dylan has one of the more common, benign types. It looks like he has a cancer more unusual and most probably malignant.
So, today, Saturday, he has to be intubated (sp?) and will get an MRI. From the cat scans, though, we know this growth is very, very large -- possibly surrounding his spine. We’ll have to get a biopsy done - so we are hoping to meet with oncologist on Saturday, too. It will feel like eternity waiting for the biopsy results as they can take anywhere from a couple to several days.
Needless to say, we are scared and stressed out. Our little guy has a long road ahead of him which will include chemo and many other tests and treatments.
I haven’t read all the email or even checked voicemail - but thank you for all your prayers, calls and visits. We will continue to rely on your support - it means so much! Please keep Dylan in all your prayers.
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