Tuesday, December 29, 2009

Lily's MRI results

Praise God!!!  We got an early New Year's gift today!  There is no sign of tumor 
recurrence in Lily's MRI.  Thank you so much again for all your prayers and well 
wishes -- they were especially meaningful this time around because of the 
seizure scare, sibling illnesses and all the holiday stress that was going on. 
 
I hope you all have a wonderful and safe New Year's.  Please know that you all 
will be thought of as we welcome the New Year and know how blessed we are to 
have your love and support.

Thursday, December 17, 2009

3 months

Wow it's hard to believe that 3 months have gone by so quickly since her last 
MRI.  Lily is scheduled for her next MRI this coming Wednesday, December 23.  
Please keep her in your prayers that she's still clear and the tumor hasn't come 
back. 
 
Last week, she gave us a little scare we had to take her to the ER at 2am on 
Tuesday because she woke up shaking and they wanted to monitor her and run tests 
on her to make sure she didn't have a blood infection. Thank God all her blood 
tests came back negative.  So now we suspect her shaking may have been a 
seizure.  Lily was released from the hospital the next day but on Thursday at 
the beginning of her PT session she started doing some startling motions that 
her therapist suspects were mini seizures.  Lily had an EEG done the Tuesday 
before Thanksgiving and I thought since I hadn't heard from the neurologist that 
'no news was good news' but the oncologist team contacted the neurologist since 
they suspect she was having seizures and apparently her results were abnormal 
(why I wasn't contacted -- is another story) and they have up'd her anti-seizure 
medications and we are awaiting for an appointment with the neurologist.  She 
has had a couple of small tremors which causes me to hold my breath but 
hopefully she won't have any major seizures before we can see the neurologist. I 
am just hoping for a quiet, hospital free holiday :-) 
 
On a positive note, she slowly progresses in development.  Her two bottom tooth 
have broken through her gums so it looks like rice kernels stuck on her gums and 
just today she put a puff in her mouth.  We were cheering her on as she put the 
puff to her mouth!  Small accomplishements for us but great leaps for someone 
who has had brain surgery. 
 
 I hope that you all have a nice holiday spent with loved ones and thank you SO 
SO much from the bottom of my heart for keeping Lily in your prayers.

Friday, November 6, 2009

HELL-oween

I think this was the worst Halloween I have ever had. A couple days before 
Halloween we got a note in our Goddard parent mailbox saying that there was a 
stomach bug going around school. Well Halloween morning I took Danika to her 
dance class and halfway through class she was complaining that her stomach hurt 
but we had a birthday party for one of her classmates to go to, so she said that 
her stomach didn't hurt bad enough to skip the party. I should have listened to 
my motherly instinct that told me not to go to the party but I didn't. So an 
hour into the party, Danika comes sits by me and all of a sudden throws up and 
this is not a little throw up - this is gushing throw up. So picture this, there 
is a pool of throw up on the ground, Danika is crying and Sammy is just hanging 
out in his baby bjorn. Yup I was carrying him! So one of the mothers at the 
party offered to get Sammy from me so I can comfort Danika and clean up after 
her. I felt so bad! We'll see if we get invited to anymore birthday parties 
after this. :-) Actually, the parents were being all nice and helping me but I 
felt bad and hoped that I didn't scare any of the parents. So we hightailed it 
out of there and went home. 
 
When I spoke to the nurse to find out how I should treat Danika's illness she 
told me to be very careful because what she had was high;y contagious! Well here 
I am already freaked out about Lily catching a cold and now we had to deal with 
a real virus entering our house. So we tried to keep Danika in her room but she 
didn't want to be left alone (I am SO going to make her read this when she 
becomes a teenager and locks herself up in her room). Then we had to make sure 
Lily didn't come into contact with anything of Danika's and then comfort Prince 
Sammy because he was acting like he was starved for our attention - clearly we 
were outnumbered! Danika was feeling better after 5 hours but we still had to 
keep the kids separate which is the hardest thing to do! Thank God my brother 
came to help us out a little for a couple of hours that evening. 
 
I am so scared that this is just the beginning of the many viruses and flu bugs 
that are going to visit us this season. I wish I could fast forward to April so 
we can bypass the whole flu season. I am just praying that no one comes down 
with anything serious, especially Lily. 

Tuesday, September 22, 2009

Lily's MRI results

2 words -> Praise God!!!  Lily's MRI results were good, she is showing no signs 
of tumor growth and her midline shift continues to improve slowly.  Thank you 
ALL so much for your prayers and wonderful thoughts for Lily and our family.  
This is truly proof that prayer works!!!  God-willing she will continue to 
respond well to the chemo and all the rest of the upcoming MRIs will show no 
signs of the tumor reoccurring.  I must admit it was a little nerve-racking 
waiting for the test results but all your well wishes made the situation more 
bearable.  Thanks SO SO much for all the love and support!!!

Wednesday, September 16, 2009

Night and Day

Lily did so well through the MRI. She couldn't eat anything after 2am so Magnus 
gave Lily a bottle at 1:30 am and she wasn't able to eat until after the 
procedure which was supposed to be at 8am but they ended up taking her in at 
9:30 so she didn't get to eat until 10:30. 9 hours without eating and all I 
heard out of her was a whimper to let me know that she was hungry. Such a BIG 
difference between her and Sammy. When Sammy had his MRI done after he woke up 
from being under the anesthesia he started crying even though he was hoarse and 
groggy. They were given the same gown so I thought I would post the pics of them 
in the same hospital gown. ;-) By the way these were taken before the MRI was 
done. 

 

Tuesday, September 15, 2009

Changing perspectives

So when Lily's neurosurgeon was recommending Sammy get an MRI done to make sure 
he didn't have a brain tumor, I was thinking to myself "DEFINITELY! Even if 
insurance won't pay for it." But now that we actually got it done and we have 
just received the bill my whole perspective changed or at least the attitude of 
'at any cost' went right out the window. Even though insurance is paying for a 
large chunk of the procedure our share is still a pretty hefty sum. So when I go 
to pay the bill I will just have to recall my very first response of 'at any 
cost' and be thankful that Sammy is healthy and sacrifice a few pedicures, hair 
colorings and that new Gucci purse I've been wanting ;-) 
 
With all the hospital and specialist bills that we are receiving I often wonder 
how people without insurance handle having an illness or having a dependent with 
an illness. Hopefully Pres. Obama's new health care proposals will actually 
bring down the cost of health care. We'll just have to wait and see.

Thursday, September 10, 2009

Please keep Lily in our prayers...

We have scheduled Lily's MRI for this coming Wednesday, September 16.  Please 
say a little prayer for her that the MRI goes well and that it still shows that 
her tumor hasn't grown back and if you have some spare prayers can you pray for 
God to send a little sense of calmness to me that I don't drive myself batty 
with worry and anxiety while waiting for her in the waiting room for her MRI to 
finish and also ask God to give me more patience as we wait for the results. 
 
I get a weekly Bible inspiration/reflection email and received the following 
today.  The topic was "We can trust in God!" and I am taking it as a sign... :-) 
 
 
    The question is not "Does God still heal people today?" but 
    rather, "Is it in God's will to heal in any particular case?" 
    That is where prayer and faith come in; we can trust in God! 
     
 
I am hoping and praying that my next email will be 'GREAT NEWS'. 
 
Hope you all have a great weekend!

Sunday, August 23, 2009

Lily's first step

This Saturday, Lily took her first 2 steps by herself and without her walker! Oh 
happy day!!! I cannot wait for the day when I can just put her down and she'll 
be off and running. Especially since she is getting heavy to carry. :-) Last 
week, her physical therapist was saying that she wouldn't be surprised if she 
walked any day now and I was just shocked at how fast it is happening! Lily is 
truly amazing! You can't tell her she can't do something because she will do it. 
Actually I think this can pertain to alot of handicapped children - they truly 
are amazing at overcoming their adversities! I was watching 'Extreme Home 
Makeover' last night and the family had adopted a 6 year old triple-amputee and 
the stuff she was doing on the show was truly amazing! 

Thursday, August 20, 2009

Appointments, appointments, appointments...

Lily had her OT evaluation yesterday and they are recommending her for twice a 
week for 6 months. OMG as if she doesn't already have enough appointments they 
want to add another and two a week!!! Because her trunk is weak and she isn't 
grasping or trying to grab things they have evaluated her at a one-month level 
for her motor skills. I am going to see if we can do the OT services here at 
Mission so I can take her on Tuesday and Thursday since I am working from home 
on those days. In the meantime they have stressed tummy time for her which 
should increase her trunk strength and hopefully everything else will be quicker 
to relearn. So between the appointments and sorting all the billing issues from 
the hospitals and specialists this has become a full time job and my leave of 
absence ends in 2 1/2 weeks. Eek!!!! I am sure things will fall into place, 
hopefully. Thank God Sammy's MRI didn't show anything so we don't have to see 
any specialists for him and Danika's eczema is healing so her allergist said he 
just wants to follow up in 4 months. So the only appointments I have to worry 
about for them is their well exams (knock on wood)! I am hoping to enroll Danika 
in ballet but we'll see if I can handle another scheduled thing to add to my 
calendar. These are the times I wish I could clone myself. 

Monday, August 17, 2009

Good news!!!

Sammy's doctor, Dr Cox, called Friday evening and the MRI results showed no 
tumors or bleeding YIPPEEEE!!!!  But the radiologist noticed that he had showed 
some immaturity of myelin development and he recommended another MRI in 6 
months.  Dr. Cox said that she didn't think it was anything to worry about as 
long as he was developing fine, she just wants us to monitor his development.  
Plus she said that she is not sure what the norm is since they usually do not do 
MRIs on healthy 4 month old infants.  He actually rolled over by himself 
yesterday so he seems to be developing normally.  I am hoping that he won't have 
to have another MRI done because he wasn't a happy camper with the whole fasting 
before the MRI and was very woozy from the Versed and anesthesia.  OK I am 
learning way too much about medical terms than I want to ;-) 
 
Lily's first physical therapy appointment went well.  The PT, Carolyn, gave us 
more exercises to do with her at home.  I didn't realize how strenuous it was 
for her, after 40 minutes she had had enough and started crying during the 
exercises but Carolyn wanted to push her a little more.  Good thing I'm not the 
therapist because I was all "I think she's done" when she started crying.  I 
just have to keep telling myself that this is good for her so she doesn't fall 
behind developmentally.  
 
Thanks again everyone for keeping the twins in your prayers!!! 

Monday, August 10, 2009

I made it!!!

OK I survived 3 1/2 hours alone with the twins with only one scare. I had put the kids on the floor for tummy time and I went to the other room to get more toys from the toy bin and all of a sudden Lily started crying really hard and I rushed over and picked her up and she calmed down, she just was tired of being on her tummy and wanted to take a nap. Taking care of the twins alone is harder than I remember I guess it's because I feel like I have to be extra watchful of Lily. I just can't wait until I can stop worrying that any minute Lily will have a seizure or something but I think this worry will stay with me for a LONG time. I just have to keep reminding myself that it's God's will and he has showed us many miracles in Lily thus far and I just have to trust Him. I just get overwhelmed at times and feel like I am not strong enough to handle what I have been given but I know God wouldn't give me anything I can't handle. OK enough pitying myself ;-) I need to focus on the daily blessings of having Lily here with us and praying for a miracle for her to be cancer-free. Thanks everyone for keeping us in your prayers!!! It means SO SO much to me!!!

Panic-stricken

It's 4:40 am and ten minutes ago I woke up with a jolt and had to gasp for air and was all panicky...I am chalking it up to either this is the first time in I can't even remember that I have slept in without Lily waking up because she usually wakes up around 2 or 3 am for a feeding or tomorrow (actually today Monday) that I will be alone with the twins for the VERY FIRST time since Lily had her seizure and was rushed to the hospital. I will only be alone with them for a couple of hours until my parents arrive but I guess I am worried that something will happen. I know it's an irrational fear and I will have to be alone with them eventually but I guess I have been slightly scarred by what happened the last time I was alone with the twins. My rational side knows the percentage of a repeat performance is VERY VERY low but I guess my overactive imagination keeps taunting me and saying "What if?!?!?!??!" I am hoping by actually writing this I will feel a little at ease and be able to calm down and fall back asleep. I know everything is in God's hands and He is always with me and I just have to let go of these irrational fears and let Him lead the way...OK have to check on Lily I think she is starting to wake up if anyone comes across this today please pray for me and ask God to send me some calmness.

Monday, August 3, 2009

Save The Date

video
I am hoping and praying that I don't jinx this by sending out this email 
but...the baptism of Lily and Sammy is on for Sunday, August 30.  I will be 
sending out invitations out later but I just want to make sure you guys save the 
date.  Lily's oncologist gave us the green light to have Lily at the baptism 
ceremony providing she doesn't get a temperature or anything.  Since she was 
baptized at the hospital already, I spoke to Father Reynold who will be doing 
Sammy's baptism and he wants Lily to be part of the ceremony since we were 
intending on them being baptized together and he wants the godparents to be able 
to be there to witness. 
 
I hope you guys can all make it, I know it is short notice so I totally 
understand if you cannot.  I'm still working out the reception to follow the 
baptism so as soon as we get that finalized I will be sending out the invites. 

Friday, July 24, 2009

Lily's blood work results

Great news!!! Lily's blood work from her first 7 days of chemo have come back 
looking good. Her hemoglobin and hemacrite levels are all good and her platelets 
level (which the Temodar are supposed to lessen) are better than when she left 
the hospital last week. Also our case RN, Julene said that Lily is very well 
hydrated and her potassium all look good. I told her that I have been feeding 
Lily every chance that I get to fatten her up and keep her strength up so that 
the chemo doesn't affect her too bad and I feel good that it has helped. She has 
also gained about .66 pounds since leaving the hospital 5 days ago. We go back 
to the clinic on Tuesday for more blood draws to make sure Lily can start her 
2nd part of the chemo cycle on Wednesday. Hopefully the results will be good so 
that we can start the next part and the results will be good like the first part 
of her chemo cycle. 

Tuesday, July 21, 2009

Seems so unfair...

Here I am wearing gloves and a mask mixing Lily's chemo medicine and having to 
give it to her when she looks all trusting and innocent-eyed at me as I place 
the chemo in her mouth and slowly give her doses...just seems so wrong!!!! To 
ease my guilty feelings I have to tell myself that this poison/medicine will 
help her fight the cancer but I just wish there was some other more humane way 
to fight this disease!!! I'm just amazed that she can still smile despite all 
that she has been through! She truly is a fighter!!! 

Monday, July 20, 2009

Some rays of sunshine...

Sammy's Xray results came back and he is normal!!! YIPPEEE!!!! He is scheduled 
for his MRI in the beginning of August and I am hoping they don't find anything. 
Lily started her chemo last Wednesday and is reacting pretty good to it, she has 
only thrown up twice but not alot and her appetite is good and she even looks 
like she has gained a little weight. She had gained weight in the hospital (6.95 
to 7.1 Kg) and the nurses were saying that 'usually their patients lose weight 
not gain it while in the hospital'. I am just praying that she doesn't get any 
infections, I feel like I am constantly checking her temperature and breathing a 
sigh of relief everytime I feel her forehead and she doesn't feel hot. 

Wednesday, July 8, 2009

When it rains, it pours...

Sammy had his 4 month appt yesterday and he is above the 95th percentile for his 
height and weight and 70% for his head circumference! The doctor wants to 
schedule an MRI for Sammy as soon as possible because of his big jump in head 
circumference but she says it is only precautionary measures because she thinks 
the big jump in numbers is pretty proportional to a growth spurt but they just 
want to be sure. Then as she was examining his legs she noticed that they were 
disproportionate so she ordered an xray for him which i got done today, to check 
for hip dysplasia...when it rains it pours!!! At least his umbilical hernia has 
gone away. Then Danika's eczema has been acting up so i should reschedule her 
appointment with the dermatologist but Lily goes into the hospital this coming 
Monday to start chemo treatment. So I just want to focus on that to make sure 
she gets through the treatments and we learn how to administer the meds when she 
comes home. Also they will be putting a V.A.D. in her chest because they will 
have to be testing her quite a bit for blood platelets and other things so they 
don't want to keep poking her to draw blood. So we will have to learn how to 
keep it clean and administer heparin to prevent clots. I am hoping she responds 
well to the chemo treatment and has no infections or complications. 

Tuesday, July 7, 2009

Home

Lily's been home for 5 days now and she is slowly getting better with a few 
setbacks.  She is able to slowly turn her head and is tracking things now but 
tires easily.  The only thing that worries me is that she has been throwing up 
and I put a call in to the neurosurgeon on call the night of July 4th but he 
says her throwing up is expected especially what she has been through and as 
long as she isn't showing signs of dehydration or swelling she should be fine 
but it is scary nonetheless. 
 
We met with the oncologist yesterday and she wants to start chemo treatment on 
Temodar next week.  She will be admitted back into CHOC on Monday and will 
hopefully only have to stay in the hospital for 4-5 days so they can do an MRI 
and monitor how her reaction to the chemo drug.  If she can tolerate it and her 
blood count level stays stable they will let us take her home and give her the 
treatments at home.  I am SO SO scared but I know God is with her and will be 
with her every step of the way...I just have to trust.  I will be staying in the 
hospital with her and Magnus and my dad will be home with Danika and Sammy.  I 
really wish I could clone myself because not only do I worry about Lily, I also 
worry about Sammy and Danika and how this whole thing is affecting them.  I pray 
that by some miracle Lily will only need one treatment but because of her age 
and how mild the treatment is I feel that they might need to administer multiple 
treatments.  I know she is strong but it hurts for me to see her go through all 
this -- no person should have to go through this! 
 
Please continue to keep Lily in your prayers especially next week when she 
starts chemo because she will need all the strength she can muster. 
 
We have an appointment with the neurosurgeon on Thursday so he can check Lily's 
sutures and make sure they are healing well before he signs off on the chemo 
treatment to start next week - hopefully all will go well.  Will update more 
later. 

Sunday, July 5, 2009

12 days

Has it only been less than 2 weeks
Gosh I feel like I have been put through the ringer these past 12 days! I think I have gone through a range of all emotions but through it all I know God has had His hand there every step of the way. I know He has a Plan and we can't understand it at this moment but I know He is doing His work through Lily. He has performed small miracles that I see when going through the past weeks events. I am strengthened by the thoughtfulness and support of all our family, friends and neighbors and even strangers and new friends we have made along the way. I know we have a LONG uphill battle especially Lily but with everyone's continued prayers I know our lil fighter will get thru this. I just have to keep reminding myself when I hit those low points in the day that God is with us and has not forsaken us.

Thursday, July 2, 2009

Going home

So much has happened since I last wrote...when the doctor told me that Lily would have a long uphill battle ahead of her it hit me on Monday. Lily was doing well in the morning but before noon she started moaning like she was in pain and started bicycling her left arm and leg and her right arm and leg were tense and held out straight that the nurses and doctor's couldn't even bend them without force. We thought she was having a seizure so they did an EEG and another CT scan on her and the results of both were negative and they didn't see anything abnormal. It was scary though seeing her do that but the doctor's don't know why and said they would just keep an eye on her to see if she has another episode like that again. Thankfully she hasn't since. So on Tuesday I got to feed her again but in the afternoon after the second feeding she started throwing up. She cried some but all her vital signs were good so the doctor's and nurses said her stomach probably has to get used to eating again and all the meds she has been on probably aggravated her stomach. So yesterday (Wednesday) I just breastfed her and supplemented only before we left for the night and she did fine and did fine last night as well. She is crying a bit more than before but it's as expected considering everything she has gone through. So since her vitals are stable and she is progressing they are sending us home!!! Yup we are getting discharged! It was a shock to me when they told me yesterday that we would possibly be discharged today. It seemed so quick and of course we feel unprepared but the doctor told me just to treat her like a normal child and not a 'fragile' child -- easier said than done ;-)

Now as I type this I am waiting for the doctor's to come in and answer all the questions we have and discharge us. I'm scared something will happen to Lily while she is at home but the nurses reassured me that they wouldn't let her go home if she wasn't fine.

Please pray for us that we get through the next 4 days at home until we meet with the oncologist and neurosurgeons to find out what the next steps will be sometime next week.

Happy 4th of July,

Sunday, June 28, 2009

Update

OK back to the email...I thought I would be able to use my blog as an update site so I don't have to inundate your email boxes but I can't access that site or facebook while at the hospital and since I am here almost 3/4 of my day I have to go back to using my email account.

Wow what a difference a day makes!!! Me and Magnus checked into the Ronald McDonald House last night so we can spend some time with Sammy and Nika since they can't sleep at the hospital. I felt guilty leaving Lily alone but I know the nurses were taking good care of her and she had a pretty good night except for her spiking a fever. When we arrived at her room this morning, she was awake and had the breathing tubes taken out of her. YIPPEE!!! She looks really well and I got to hold her and feed her!!! She's eating well and even left me a surprise on my jeans while I held her. :-) She is crying a bit which is a welcoming sound to my ears since I haven't heard her in 4 days. They are thinking if she keeps stable they will take out the "Brain drain" tube tomorrow. She is still running warm and they are monitoring her for any signs of an infection, which I am hoping will not develop.

Like I said earlier, I don't want to inundate your email boxes so please let me know if you would still like to continue receiving updates or be taken off this list.

Oh some of you were asking me about Sammy...he is doing good but missing his sister. He has his 4 month appointment tomorrow and I am going to get a referral to have Sammy checked for any tumors. The neurosurgeon said there was a slim chance (5%) but for peace of mind I would like to have him checked, just so I could sleep at night and not have to worry.

Also I can't access my Facebook account, so if you get a chance can you send a message to all of the people you have asked to pray for Lily and keep in their thoughts that we really appreciate it and know that Lily would not be progressing so well if it weren't for everyones thoughts and prayers.

Saturday, June 27, 2009

Second surgery

First off I truly believe this email  and the news I am sharing with you all would not have been possible without all your love, support, thoughts and prayers!!!  Lily has made it through the surgery (step 2) of this long uphill battle she will be going through!!!  The surgery started at around 2pm and lasted about 2 1/2 hours.  Dr Loudon was able to take all the tumor out and the preliminary CT Scan from last night shows that there is no swelling and bleeding.  Hearing that Lily made it though the surgery and was in stable condition and that they got the whole tumor out was such a welcome relief, we were finally able to smile for a change.  I feel like I haven't smiled for days!!!
Since Lily's journey to recovery is just beginning and we are still on a take each day as it comes please still keep Lily in your thoughts and prayers.  She's a fighter but she is going to need every ounce of strength she has to get to each milestone to full recovery.
Yesterday my friend Mark came to see us.  He is doing his residency in hospital chaplaincy.  So when we were going through the events of the past 4 days (felt like years) it was amazing to see God's hands in everything even the smallest things like Sammy reassuring me that Lily made it though the surgery 5 minutes before we got the news that she actually did. Or the fact that CHOC had called Dr Loudon to come take a look at Lily that first night even though they basically thought there was nothing they could do for her. Or how the 20% of the tumor had quarantined itself, etc...
These past few days have been humbling with all the things you guys have done out of love and support for Lily and our family.  We are truly blessed to have such wonderful friends and family and to have made new friends along the way.  Also to hear that Lily was being thought of and prayed for by people that we don't even know.  OK I'll stop before I wet the computer and short circuit it. :-)

Thursday, June 25, 2009

Move

You all have truly made me believe in the power of prayer!!!  Words alone cannot express how much our family appreciates all the love and support you guys have given us in the past 2 days (hard to believe since it feels like we have been here for a month or so)!! 
We were given a little ray of sunshine yesterday afternoon and Lily has been stable and has started to move and opened her eyes a couple of times.  The neurosurgeon wants to send Lily back to the OR to take out the rest of the tumor.  The MRI results from yesterday morning showed that there is a demarkation of the rest of the tumor, that appears that the tumor has been self contained and Dr Leudon is hoping that when he goes back in he will see that the tumor can easily be removed.  She will be moved to CHOC of Orange sometime today and then is scheduled to be in surgery at 1pm on Friday which should last about 3-4 hours.
So please continue to keep Lily in your thoughts and prayers especially the next 2 days that she continues to remain stable and grow stronger for the surgery and will get through the surgery just fine and the doctor and his team be able to remove the rest of the tumor without any complications.
I really REALLY really believe that your prayers, love and support have brought us this miracle thus far and have given Lily the strength to fight and get through this ordeal, it's going to be a LONG uphill battle for her but I know you ALL are making a world of difference for her and we thank you ALL SO SO SO much.  Like I said earlier words cannot express the gratitude we are feeling and we are SO SO SO blessed to  have this much love and support.  You are not only giving Lily strength but also are giving us strength to deal with everything that is happening.  My tears have turned from tears of sadness to tears of thankfulness, joy and hope.

Wednesday, June 24, 2009

Medical article

One of our friends came across this...
I came across this article. I’m going to continue praying and will hold on to hope.

http://www.springerlink.com/content/r172432520328t32/

Although survivals of infants with malignant brain tumors are worse than any other age group, one possible exception to this rule are the malignant gliomas. Eighteen children less than 3 years of age with malignant gliomas (glioblastoma multiforme, anaplastic astrocytoma and malignant glioma) were treated on the Pediatric Oncology Group regimen of prolonged postoperative chemotherapy and delayed irradiation, (1986–1990). Of 10 children evaluable for neuroradiologic response, 6 had partial responses (> 50% reduction) to two cycles of cyclophosphamide and vincristine. Progression free survivals at l, 3 and 5 years were 54.25% ± 12, 43% ± 16 and 43% ± 23 respectively. Survivals at 5 years were 50% ± 14. Four children were not irradiated after 24 months of chemotherapy due to parental refusal and none have developed recurrent disease. Neither degree of surgical resection, presence or absence of metastases, nor pathology influenced survival but this may reflect small sample size. This study suggests that some malignant gliomas in infants are chemotherapy sensitive and may be associated with a good prognosis. Why infants with these high-grade gliomas fare better than adults is not clear. It is likely that there is something intrinsically different about them that cannot be identified on routine pathologic examination.

Lily to ER

Lily was rushed to the ER at 5:00 pm today because she became unresponsive upon waking up.  They did a CAT scan on her brain and found a mass on her right side and needed to do surgery immediately because it was being bled into.  They removed 80% of the mass but they did a preliminary biopysis and it is stage 4 malignant glioma, which is a cancerous tumor.  It doesn't look good but we are praying for a miracle.  She is sedated as I type this at 2:00 am and her vitals are good but her blood platelets are low so they are running a transfusion on her right now and she is under a paralytic and pain relievers to keep her comfortable. 

Sorry for any confusion if I didn't use the medical terms right, I am still trying to process everything.

Right now it is a wait and see from day to day.  So please keep Lily in your prayers that God's will be done and we have the peace to accept it.