Day 9- New Years Eve

Thank you everyone for your texts, emails and calls to check on Madeleine, we truly appreciate everyone's concerns and wanting to hear the news. Of course our first priority is always the baby and speaking with the doctors and care providers before anything else.

The surgery on Thursday went phenomenally. Our neurosurgeon came out immediately afterward to confirm and reassure us that she was doing absolutely beautifully. It took some time to get her back upstairs and comfortable, even though she mostly slept off her anesthesia and we had lots of visitors, including our Dr specialists. She's a little uncomfortable with the healing incisions on her head but is handling the discomfort very well. We continue to watch over her very closely, snuggle her every opportunity and try to reassure her that we won't be in this place forever.

She looks amazing. This child has shown so many people what courage and strength look like. She is handling all of her procedures very very well, all things considered. Each day we set a goal whether it be resting, feeding, whatever and have met all of our daily goals over the last week. Madeleine is truly a strong little survivor in my opinion. She is doing so well, they've moved us Friday morning (at 2am) to the pediatrics floor out of ICU, and we've just learned that unfortunately due to insurance red tape, they're going to keep us the duration of this weekend and next week instead of sending us home so as to not jeopardize Madeleine's investigative tests prior to her chemotherapy. Apparently insurance won't cover the admission for her tests next week because they are considered "outpatient". :( so what's another holiday in the hospital....

It's too early to have the confirmation on the type of tumor she has; they think it's a malignant germ cell tumor of the pineal gland, which turns out to be not very common in people her age but does have a very high success rate of treatment. We do not expect to hear that it has spread to any other area of her body but they want to do a spinal tap to make sure. Over the next week-10 days, the specialists will perform the tests they need from the biopsy, prepare their recommendation for therapy, put in a central line access in preparation for her treatment and she will likely undergo a few more mini procedures such as another MRI and the spinal tap (mini considering what she's already been through). We are preparing emotionally & mentally for her to undergo inpatient chemotherapy, at least that's what we expect them to tell us, that could last 4-6 months. They've advised us that chemo could essentially begin immediately after the central line and spinal tap are completed. Our plan was to go home today and be re-admitted Wed or Thursday evening in preparation but have just learned that's not possible unless we have boo-koo bucks to pay for those tests they need. bummer!

As part of her chemotherapy treatment, Madeleine will likely need blood transfusions. She and I are an exact type match of A- so my first appointment to direct donate here at UCLA is Tuesday and I will continue to donate throughout the duration of her treatment as often as they let me. If you would like more information on how to donate blood for Madeleine, the website is www.gotblood.ucla.edu. I'll have more info on that after Tuesday.

Many of you have asked how Annalise is doing. She is coping much better; she fully understands that sister is sick and she is very concerned for her. Any of her confusion and frustration has been directed towards us, which we can certainly handle and are learning from the child development team here ways to help her communicate. She has been able to come and visit every day.

Please rest assured that although Madeleine has not kicked this thing yet, she is doing very very well. Our updates may become once a week and really appreciate your continued prayers. Hopefully by Annalise's 3rd birthday in June Madeleine will be 100% tumor free or at least cured as much as possible for us to have a much needed family vacation together. Until that day, please keep our baby girl in your thoughts and prayers. 

Day 7 - a personal email

Hi Mija, I,ve been asking Jess [Veronica's sister] to shave my head in honor of my baby. I will continue praying for all of you and will be looking forward t the good news when she through all this. I know the LOrd is with you and I will continue praying for all of you.  I love you  all very much and I will come down there whenever you ask.  Keep your faith. The lord is with you! Maybe you can save this to show my baby how much I love her and the support I have for her until she's better!

Day 6 - Daddy's Birthday

Today has flown by. There are days when it seems very little is happening and some days that are like a tornado - today was a tornado. 

We started the day optimistic as the lab work came back showing "positive" signs we may not have to do surgery. Madeleine was comfortable throughout the morning. The MRI has good indications the tumor is only in her brain and has not affected her spinal cord but we do need the biopsy surgery. She is undergoing a blood transfusion now to bring up her platelets and help her tolerate the anesthesia and surgery better and will overall help her feel better tonight. The surgery and prep is expected from 7am-2pm so it will be a long day tomorrow. The neurosurgeon came to talk with us this afternoon and explained how he plans to do the surgery - we have so much faith in him. In his experience he has not seen significant complications with this kind of surgery and he does not expect significant bleeding from the procedure but it is still very delicate. The tumor is huge, relatively speaking for her little head - 4cm x 4cm in the center of her brain covering the pineal gland. The x-ray images are incredible! for some reason that doesn't scare me like seeing the baby intubated, the x-rays and MRI imagery are fascinating and unbelievable. This whole experience is still so surreal we cannot believe what we're currently going through. Please keep Madeleine in your prayers! and thank you

The lab work and tests will take several days to come up with diagnostic results, so after tomorrow, we wait, we wait, we wait - the hardest part. After that we'll hopefully have the roadmap to treatment and recovery. 

Day 4

She's doing ok, we finally came up with the right recipe for her to hold down her milk today. She was on an easy IV and still anemic but improved.

Tomorrow we have another MRI so we start all over again w\ the anesthesia and inebbation and recovery to prep for the surgery Thursday. It takes a lot out of her but hopefully we can help her recover faster w/ this recent experience making her comfortable. Still a long road...

Day 3 - Christmas Day

Merry Christmas!!! 

We've received the absolute best gift - a much healthier baby! Thank God!

Today we spoke with the doctors and her anemia is improving as well as her feeding so no more blood work, no feeding tube, and likely no more IV this afternoon. She slept relatively well & comfortably last night. So did Daddy so its my turn to nap throughout the day or tonight. There is strict policy the ICU provides sleep accomodations for only one parent, but we're not going home at night till she can come home too. Surgery is scheduled for Thursday. Until then, lots of rest and continued observation. 

Finally, phone calls are an option now. Thank you everybody for extending Madeleine to your families for prayers and well wishes - my baby girl has touched so many people. We hope you have a very Merry Christmas! We'll have one in our living room when baby girl comes home. Annalise represented at midnight mass last night :) 

Day 2

What a night. After placement of the shunt they are trying to monitor every little thing in the PICU. Poor thing hasn't really caught her breath on rest yet. Neither have we. Late last night a follow up CT scan identified some bleeding in the ventricles in which case they had to be prepared for emergency surgery today in the event her CT scan this morning indicated additional or continued bleeding. Good news the bleeding stopped so she can now rest as much as possible and eat finally. Poor thing has vomited most of what she's been fed.

They've moved up her target date for the biopsy to Tuesday and at that time they will remove as much of the tumor as they can safely. What we've been told so far is that the tumor is overgrowing her pinneal gland in the center of her brain.

Keep 'em coming! All those prayers are working & we certainly need all the strength & encouragement. Thank you SO MUCH for every kind word & prayer & gesture we truly appreciate it!!

Day 1 - VP Shunt surgery

THANK YOU for your thoughts, prayers, well wishes and love - it's working! she looks amazing! Her face looks softer, her eyes aren't puffy, she's a bit groggy but she hears us & is cooing to us! THANK GOD! So relieved!

"THE" tumor doctor expert is Madeleine's oncologist we met her this afternoon. She will determine what kind of tumor she has and will lead the team to make the decisions in Madeleine's best interest. They are running labs to see if that gives them enough but likely she will have the biopsy surgery Wed or Thurs of next week. She will also need to have another MRI next week or about a week after the biopsy. At this point there's no way to know exactly how long she'll need to remain in the hospital.

The hardest part is over we think. It's been an incredibly emotional rollercoaster of a day. We are relieved she is feeling much better and comforted by the knowledge and confidence of the doctors taking care of her. ALL of the staff have been absolutely incredible! They take the time with us, don't speak down to me who isn't as familiar, and some of these doctors are truly touched by our baby girl.

Day 1

We're finally upstairs in the PICU. The MRI has been scheduled for 8 am. They are monitoring her vitals and all looks good, the reason we're in ICU is in the event the pressure in her head becomes too great the neurosurgeon could do an emergency shunt at her bedside. Basically, it's precautionary.

As of now, it appears the tumor or mass is causing the cerebral fluid to back up, which is causing the hydrocephalus. They have a special doctor who will hopefully evaluate her as they do the MRI to decide on the biopsy right away. The procedures will take at least one hour and once she's placed in recovery we'll be with her.

Updates coming sometime after 11 I would guess. Everybody, rest for me! Can't sleep.

In the ER - Day 1

We are still in the ER. Madeleine has been admitted to the Children's Hospital at UCLA. She will be in pediatric ICU.  We are currently waiting for them to schedule her MRI. She most definitely has the hydrocephalus we feared and eventually will need the surgery to place the shunt in her head to drain the fluid.
Unfortunately  the neurosurgeon has identified a "mass" on the scan so they've ordered the MRI to determine if it's a tumor which they believe it is. After the Dr's review that likely tomorrow they'll determine whether to biopsy the mass or not, also if she has to undergo surgery to remove it or undergo chemotherapy and/or radiation. There are a lot of unknowns right now until they have the MRI. She will be under anesthesia for the MRI so they'll move quickly on whether to biopsy or remove the growth while she's under.
Jeff and I are keeping it together but we really can't speak well, its extremely difficult to understand why Madeleine has to endure all of this. I will keep you posted frequently its just very hard to have a conversation, text & email are better right now. Thx for understanding.
We need your prayers!!