Wednesday, October 31, 2012

Prayer Request for another family

please pray for my friends the Adams family



friendsoftheadams posted: "Ginger wrote last night: Ian spiked another fever this afternoon and cough got a bit worse. His lungs also started sounding more congested, so they switched him to a different antibiotic and then added a second antibiotic on top of that and ordered ano"
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New post on supporttheadams

Ian's getting worse

by friendsoftheadams
Ginger wrote last night:
Ian spiked another fever this afternoon and cough got a bit worse. His lungs also started sounding more congested, so they switched him to a different antibiotic and then added a second antibiotic on top of that and ordered another chest x-ray which was done this afternoon. They also sent a viral panel which tests for more types of viruses than the limited panel which was already done.
Even though I really don't ever want to be in the hospital I now feel like Ian is getting sicker and it is safer for us to be here with them closely monitoring him. They are doing vitals every two hours right now.
Just now they checked his oxygen saturations and they were in the low 90s and upper 80s, which is not good. I am feeling such dread, please continue to pray for Ian. (And me because i am worried)
friendsoftheadams | October 31, 2012 at 9:34 am | Categories: CHOC, Ginger Writes, Prayer Request | URL: http://wp.me/p26vr9-mJ
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Tuesday, October 30, 2012

Pumpkin Time

Pumpkin Patch 2011
Look at this photo; we didn't have a CLUE...how our lives would change.
This family loves October. Pumpkin cream cheese, pumpkin lattes, pumpkin pies, pumpkins! We even made pumpkin pancakes for brunch and pumpkin muffins (thank you Trader Joe's). Looking at our photos from last year at the pumpkin patch makes me sad; some days I wish so hard we could go back and live our lives like it never happened.

Radiation & Halloween & Emotions, oh My!

I have yet to finish a post- I have three drafted, none completed. Some days it is impossible to be "poetic" or strong, or inspiring. Some days the pressure is just too much and my thoughts are not comprehensive. We have reached that point in time where our real thoughts and feelings do not leave the confidentiality of our home because it's constant venting: anger, frustration, despair, bitterness, fear. The "why us," the "It's not fair," the "enough already!" 
Many things have happened that I should share, I just haven't had the patience or filter to share with all of the emotions involved. I will catch up, I promise. The most important thing is Madeleine's upcoming treatment. For whatever reason, it took nearly two full weeks to get the plan decided and moving.
Beginning Thursday, Madeleine will have radiation therapy every single weekday for a minimum of 25 sessions. She will also be on an oral chemotherapy I will give her each day when she completes therapy. Praying to God we can actually have a Christmas this year....

The facts are that Madeleine is doing really well; she is healthy and strong, happy and incredibly mobile. All great things going into this next phase of treatment. She has healed rather well from the surgery, and all that is left is a half-shaved head and some minor facial paralysis that Dr Lazareff believes will heal itself with time. 

She is still too young for radiation. The target age is 3 years old, and 5 years is better. We knew from the very beginning that radiation could be the worse thing for her; however, it's also the best weapon against the tumor. So what do we do? The fact remains that Madeleine is now 12- almost 13 months old- and in terms of development, she older and more developed than she was at 4 months old. The older she is, the better. The docs never want to do radiation on children this young, because no matter how you look at it, you are still destroying a portion of the brain that otherwise would continue developing into the wonderful, beautiful mind. However, without radiation, the tumor would grow back. Quickly.
Like good students we've researched on our own and put questions and challenges before our doctors to provide us with comprehensive recommendations. We have decided to move forward with photon IMRT radiation and an oral chemo called vorinistat, which they think is synergistic with radiation therapy. We'll begin with a standard dosing and special suspension form and watch her very closely. Her "planning session" was on Monday, and she had a CT scan of her brain so they can set up the consistent radiation therapy model. She will have at least 25 sessions, Monday through Friday, and be sedated for each and every one. She has to remain perfectly still in order for it to work, so they'll sedate her to ensure precision. This is obviously not Madeleine but it does give perspective to how she will look going into the therapy every day (which I do not see; it's traumatic for parents). 

There is good to this phase: we will be on a set, consistent routine for probably the first time ever. I've read that routines are good for "extremely spirited" kids like Annalise. She continues to have challenges understanding all of the extra alone time and care that Madeleine gets, and for us as parents it's extremely difficult to give equally to the girls our time when once we put them to bed, we are alone with our thoughts and fears and frequently have trouble sleeping, as in, at least 3-4 times a week. Eventually it catches up to us and we are completely useless zombies at least one day out of the week. We're trying so hard to rest our minds and bodies so we can be better parents. It is a complete understatement to say this journey is challenging, as every parenthood is challenging. We appreciate the "you guys are so awesome" or "you're amazing parents" but the fact of the matter is no matter how amazing or awesome we appear to be, we still have a child hurting, struggling, frustrated. We had started the ball rolling on her therapy to help her deal with her extreme 3yo emotions that unfortunately took a side burner to Madeleine's surgery and recovery. With Madeleine beginning regular, outpatient therapy it could be the most opportune time to restart therapy for Annalise and introduce her to her social environment she seems to be craving and could be the piece of her confusing puzzle that will help her the most. Halloween is tomorrow, and I have nothing for the children. Call it laziness, call it last minute, call it just not in the mood to try to put on a celebratory face. We really are trying to figure out how to get out of this funk. Annalise wants to be a brown puppy dog, namely Copper from the movie The Fox & The Hound. I'm sure with a little resourcefulness I can throw something together for miss Madeleine, although one of my very good friends suggested she should really be her own superhero :) an idea I absolutely LOVED- of course until the new tumor showed up :( this roller coaster just doesn't give up sometimes.

Saturday, October 13, 2012

Mobbed by the JoySquad

Amidst everything that was going on in September, I never really had a chance to share an amazing story.
Photo: The helicopter has dropped the 500 golf balls representing 500 courageous families fighting cancer!!!

In September, being Childhood Cancer Awareness Month, the Jessie Rees Foundation posted a daily challenge on their Facebook page to inspire, educate and support child cancer warriors. My mom Kathy (to the girls she is "Mimi") went to their website and requested a JoyJar & a t-shirt for Madeleine. She had noticed that there was also a way to "nominate a courageous family"- a child battling cancer and their family for the difficult journey cancer brings to families. Up to 500 children would have their family name placed on a golf ball and at the Foundation Annual Golf Tournament, those 500 golf balls were dropped from a helicopter above the green; whichever ball ended up in the hole was the NEGU Ball Drop Winner. (you can read about the golf tournament fundraiser here.)
What do you know, Madeleine won!
Photo: The Jessie Rees Foundation is so honored to recognize the NEGU Ball Drop winning family: Congratulations to Madeleine and the Vasquez family!So this afternoon, we had the wonderful pleasure of hugging and meeting face to face Jana & Cheryl from the Jessie Rees Foundation and spending almost two hours sharing our girls and Madeleine's story with them. They mobbed our girls with more toys than ever! It was like Christmas in October!! :) We were smiling ear to ear to see both Madeleine and Annalise so excited and overwhelmed at all the goodies. We feel like they deserve it, and so much more than we could only hope to give them. As the evening has progressed on, both the girls are having so much fun playing with their new toys; Daddy also got a new toy- a new TV! Which of course he set up this evening, and the girls also got a TV in their room for their Disney collection. Blessings all around. Jana & Cheryl brought goodies for Mama too- a mani pedi gift certificate, a paid appointment for a housekeeper! and a great tall NEGU acrylic cup for my iced coffee I will proudly take to Madeleine's radiation treatments to help spread the word about this wonderful foundation.
Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows. -James 1:17


Erik Rees, the foundation's founder in his daughter's name, has inspired Jeff and I since the beginning of this journey. Jessie Joy Rees was a beautiful and inspiring young lady of 12 years who also fought two brain tumors. For 10 months she fought for her life, all the while focusing on how she could help other kids overcome the fear and loneliness of the hospital and cancer. The days leading up to Madeleine's diagnosis, before we knew the pathology of her tumor, we learned about Jessie. I couldn't believe how incredible this little girl was, so beyond her years. Sadly, Jessie earned her angel wings January 5th; it scared me to death that Madeleine might have the same tumor as Jessie. The very next day I distinctly remember asking Dr Davidson before she had a chance to tell us the pathology if it was the same as Jessie's. Ever since, I had felt a special connection to Jessie, and her parents. It has been unbelievable to Jeff and I the motivation and grace they have showed and how the foundation has grown exponentially partially out of their grief. What an amazing angel Jessie has become; I thank God for Madeleine's angel, Jessie.
Please consider this foundation in making your annual charitable donations to inspire child cancer warriors and spreading awareness. www.negu.org

Friday, October 12, 2012

Homework Time

Late at night. It's always late at night.
Tonight my mom flew back home to Reno, Annalise went to have a sleepover with Grandma. The last two days Madeleine gets up a little later in the morning, around 9, and she stays awake all day without a nap, crashing early and sleeping throughout the entire night. Out of character, yes; but it's as if she is fully "charging her battery" each night to live up every moment during the day. Before the tumor came out, her sleep was interrupted every night. She would cry. She was restless. She hasn't cried at all since the surgery. Not once. Coincidence....?
10/10/12
Tomorrow Jeff is coming with me. Dr Davidson will see Madeleine first to look her over, talk to us about the MRI, give us her initial thoughts on treatment, and hopefully discuss the pathology of the tumor. We want to talk to her first to lay the ground work in our own minds about what radiation means for Madeleine. In the afternoon we will meet with Dr Selch, the neuro-radiology oncologist for our first consultation. I've already told our hem/onc team that I want to know everything: what are all the options and why it is or is not a good option for Madeleine. I probably won't be able to sleep. I've been researching the different types of radiation I know other kids have received. But every story, every kid is different. There isn't anyone who knows Madeleine's story better than me and Jeff; I'm never going to know all the intricacies of those children's treatments and conditions, so there's absolutely no way to compare- just to get educated.

One of the hardest parts of this disease is that there is NO ONE WAY. Every single decision we make is a luck of the draw. There is NOTHING that proves whatever choice we make will be the right one.
Let that sink in for a minute....
Every parent we have come across with an ATRT child thinks they are making the best decision for their child. We are all the same. But our children are not. A little newly diagnosed baby just passed away this week; her parents were trying to avoid steroids and chemo because of side effects. Another child has been fighting unrelenting for almost 18 months. Her tumors- yes, plural- grow ridiculously fast; for some reason, her treatment isn't working. It. Isn't. Working!? I pray for that little girl; she's starting to give up. She's 4 years old. I write about this because these are my thoughts; it upsets me when people close to me don't freakin get it- they act like nothing is happening, like Madeleine's illness is not real. It hurts, so bad. the worst part- they don't get it. Just because my life has stopped and turned upside down, that doesn't mean yours does. I understand that. It still hurts.

Stitches 10/10/12
Madeleine is healing better than expected, slowly and surely. Each day we have seen progress. She really hated the hospital; she knew it wasn't home, she was not in her bed, the nurses had to keep bugging her. Once she came home on Monday, she slept most of the day and all night, catching up. Tuesday she was closer and closer to the baby we had Thursday before the surgery. Each day she is talking a little bit more, she wants to play on the floor, walk around holding your fingers, look at her books. She has now really learned to get around in her walker so she's getting into a little bit of trouble getting into things but it's pleasant and I chuckle a little taking things away from her or watching her reach into her diaper bag and pull out her toys. Her dressing began coming off with all of her moving around and it looks really, really good. These stitches look better than the previous surgeries.
We are only 6 days post-op, so we don't have extremely high expectations of her getting back to the baby she was, although we hope it's sooner than later.

Monday, October 8, 2012

Madeleine's choice of sleeping spot

Sent from my Verizon Wireless BlackBerry

Long

In PACU after surgery
It...........has...........been......the........LONGest......... weekend.......ev.......ER.............. Time has literally crawled by since Friday morning. Hurry up........... and wait.
 Friday was the longest day ever.
Both Jeff and I were a silent mess, though we both reiterated that as long as Madeleine is safe they can take all the time that they need. Take all day, just come back with good news.
We spoke to Dr Lazareff around 10:45 though surgery didn't actually begin until around noon; we turned her over about 8 am, and we were finally able to join her after 4 pm as she awoke from the anesthesia. Her surgeon indicated the tumor was removed in pieces, and that the whole area is very delicate. We were cautiously optimistic that everything was removed. Her last brain surgery was in February and we couldn't help but constantly compare her behaviors and reactions between them. The good news is with her age (and/or experience) she has been recovering beautifully. Each day she has noticeably progressed with her movements and activities. Friday evening she was hooked up to several IV's and monitors that kept her pretty immobile as well as cranky; she did not like it at all and seemed to be crying to me as if to say, "why aren't you picking me up and holding me?"
Saturday morning
She went back to sleep after her last feeding at 6 am and I awoke to her around 9 am Saturday playing quietly in the hospital crib by lifting her toe with the pulse ox light so she could see it and gradually lifting her other ankle wrapped in gauze hiding a peripheral IV on the side of the crib just a little higher each time. I gave her a few of her favorite toys and she remained quiet and entertained herself with them as I watched. She was still NPO (hospital speak for nothing to eat/drink) in anticipation of the MRI, which still wasn't actually scheduled; there was a chance it wouldn't happen, pending having a pediatric anesthesiologist. Eventually around 11:30 they took her downstairs to imaging and I was able to stay with her in the MRI room as they prepared her for sedation. This MRI would show us if the surgery was successful in removing the whole tumor. I left her in their care and waited in her room for her return. By afternoon most of her extra monitoring was discontinued; she got a bath and all the lines were removed, allowing for us to pick her up. Did I mention how the day just dragged on? dragggggggggggggggggggged on super slow it seemed, just waiting for someone to come tell us news, good or bad. We prayed for good.
We didn't hear anything the rest of the day, and Jeff let me go home and get some rest since we didn't really sleep more than 3 hours Thursday night before the surgery, and I had only about 3 hours solid sleep Friday. He stayed up all night watching over her and apparently she was hungry enough with the steroids that she very willingly took a bottle from him twice throughout the night. whew!! I was able to sleep a solid 8 hours before I jumped up realizing it was morning and hurried back to the hospital. In Sunday morning rounds, the neuro-surgery team came in and finally gave Jeff the MRI results: they got it all. The doc showed him the MRI from last week and the one from Saturday, and Jeff said he's seen with his own eyes, what once was there is now gone. In an instant, the weight of an elephant is lifted from our shoulders. Now we focus on getting her well and recovered. The rest of Sunday we noticed more improvements in Madeleine; she began verbalizing some of her favorite words and responses, trying to pull herself up by herself, and managing to balance her torso so she could sit up unassisted. Although she was doing these things easily before, it was a huge deal she was doing these just days post-OP. She continued to nurse well and humored solid foods a little. Again, the day just dragged as we tried to figure out if they would discharge us as she cat-napped throughout the day. I helped give her another bath and we took turns playing with her. Sunday Annalise stayed home with my mom, and Sunday night Jeff went home earlier to have dinner with her and play before bedtime. We all talked on the phone several times: Annalise to Mommy & daddy during the day, I to my mom; in the evening Annalise, Mimi and Daddy all talked to Madeleine and she insisted on standing on her bed while resting her head on my shoulder and holding the phone so she could listen. Precious moments indeed.
It's now Monday morning and the docs are saying we can go home. They'll discharge M after they remove the bandage with the remaining dose(s) of her steroids given orally, since there is really no reason to keep her . Her vitals have been amazing, she's breathing without any issues, her heart and blood pressure look picture perfect, all good things. Likely this week we'll meet with the pediatric neuro-radiology to discuss radiation options available to us based on Madeleine's tumor area, her age, etc. I guess this week I'll be an A+ student learning brain anatomy. I want to understand as much as I can about what areas of the brain control what so I can ask informed questions about what throughout Madeleine's life could potentially suffer as a result of the radiation to the tumor area. What we do know is that without radiation, the tumor will surely grow back. With radiation and another chemo treatment, we're hoping to nip it this time. The probability of it coming back a third time is still probable, unfortunately. We'll keep praying that it doesn't. I'll say though that me & God are having some pretty difficult heart-to-heart talks though lately. I'm upset and my faith has suffered. I had faith she would be ok, and the tumor came back. She is ok; I'll give Him that. But our little girl shouldn't keep having to have her skull sawed open with a jackhammer and undergo these extensive and tedious surgeries for the greater good of men, or whoever is worked into this plan. I'm very upset about that. I've asked Him to minister to me to help get me back to a place where I can have unyielding faith that He IS protecting my baby, not just allowing her to get well to suffer again. I can't take that. I quite literally say the Serenity Prayer over and over each day, because I question what I can accept as part of this journey. Thank you so much for the continued prayers for our family, we definitely still need them.

Friday, October 5, 2012

Resting Now

THANK YOU LORD, for protecting our baby!! She's resting comfortably since coming out of surgery around 4pm, much later than expected but we're "cautiously optimistic" that all of the tumor has come out. She will have an MRI tomorrow to confirm. For now, tonight she is under the watchful eyes of the PICU team at Mattel Children's Hospital and Mama. Hopefully we can all get some much needed rest after this long and dreadful day we have survived. Thank you everyone for your prayers!! ♥

Longer Than Expected

Time has never gone by slower.
We turned Madeleine over to the anesthesiologists around 8:15 this morning after we accompanied them through the halls to the OR area. Although her surgery was scheduled from 7:30-11:30, they can essentially take as long as they need to complete the procedure. Around 10:45 her surgeon, Dr Lazareff came to the waiting room to let us know that they had just finished prepping her for the surgery itself and he would be joining her then. We are praying diligently, nonstop for her safety and protection.

Thursday, October 4, 2012

Surgery Friday

Madeleine will be admitted around 5:30am on Friday for her 3rd craniotomy. The tumor is much smaller and appears from the MRI to not be connected to any of the other soft tissues - all good things, considering it's a BRAIN TUMOR...
The procedure is to be approximately 4 hours, and I'm happy to post updates as they become available throughout the morning. Please remember Madeleine in your prayers as she goes back on the OR table. And most importantly, please pray for Dr Lazareff and all of the medical team who will be attending to her in surgery. With God on her side, she will be safe.

As a follow up, Madeleine did not have the bone scan this week. Dr Davidson reviewed the MRI closely with the neuro-radiologist and they agree that what the images show is consistent as predicted with her chemo treatment. She also mentioned that this kind of tumor typically does not adhere to actual bone, so that was very relieving news.
We also learned that the cytology from the spinal tap was NEGATIVE FOR MALIGNANCY, a huge relief for us. We know now that the tumor is again localized to just the pineal area of her brain and the cancer has not spread. Again, all things considered, this is the best position we could be in to fight for her this go-around. As if her first fight was not hard enough, each subsequent relapse lowers her chances even more as the tumor cells grow more resistant to treatment. I share this information to help people understand what we are dealing with and by no means to lower anyone's spirits, but rather to remind anyone who thinks of her or prays for her to plead for those thoughts and prayers daily, hourly if you can. Thank you, God Bless

Tuesday, October 2, 2012

FIRST BIRTHDAY

MADELEINE IS 12 MONTHS



12 months of courage
12 months of hope and faith
12 months of wishing we could take your place
12 months of achievement
12 months we will NEVER take for granted
12 months of bravery
12 months of love, devotion & prayer
12 months of thankfulness & grace
LORD GOD, PLEASE GIVE US 12 MORE MONTHS WITH OUR BABY GIRL

"Before I formed you in the womb I knew you, before you were born I set you apart..."-Jeremiah 1:5