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. 

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!!! 

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. 

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. 

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. 

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.

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,