Madeleine doing work

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All's Well

After the antibiotics on Friday, we were allowed to go home because Madeleine's ANC is perfect- meaning her immune system looks good and is fighting the infection so she isn't sick. This course of antibiotics will give her the extra punch she needs to fight it off and keep it from getting worse. She is very happy and active like usual. It was an extremely stressful day on Friday though, thinking we might have to admit her to the hospital and working with the insurance company and the home health. For now, all is well and we're taking it one day at a time. Today the nurse came, cleaned her site and changed the dressing again (this is typically done once per week; she's had 4 dressing changes this week) and gave her the antibiotic infusion. We had a friend over this morning to play.

She will have another dose of antibiotics tomorrow, and if the dressing is messy, we keep changing it. We're back to the hospital on Monday for Radiation treatment #3 and Tuesday she'll also go to clinic for labs.

Thank you to everyone who prayed for little Ian Adams. His family posted the following update.

getting better~! by friendsoftheadams Ginger reports: "Ian's viral panel came back positive for the flu virus. They have discontinued antibiotics and will observe for 24 hours to make sure the fever doesn't come back. The plan is to discontinue fluids tomorrow. Ian & Papa Steve He is still off the oxygen and Papa Steve (who was with him today so Joey could go to work) reports that he is eating well, napping well and happy!" Thank you everyone for your prayers and encouragement!!

First Cheerios!

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Adventures in Babyfood

Madeleine is doing really well; it's the rest of the family that is still struggling!
I don't think I have mentioned that Madeleine's counts have, for the most part, recovered; she has not required any transfusions in several weeks now. Our labs and clinic visits have both been reduced to once per week. Eventually labs will become every two weeks, then once a month at which time she will have the surgery to remove her central line. We're scheduling her next MRI now, if insurance allows, for late September.

Madeleine's occupational therapy started last week with an assessment and Monday we began therapy. It was amazing to see how small changes make such a HUGE difference! It was as simple as changing the consistency of her food to something more viscous and actually applying a slight pressure to her tongue with the spoon and she's eating like a champ! I literally burst into tears within minutes of beginning her session, she was eating so well as if there was never any issue to overcome. I know that it isn't my fault; it's not my fault her delays, her challenges, her inability to progress (up until this point) and I have to not feel guilty for these things I know she will eventually overcome. However, it is hard for me to not feel responsible. Perhaps that is why I was so emotional at watching her not only take interest in the food but really successfully take it into her mouth and swallow. The littlest things can be the biggest moments...

We are taking it slow because as the assessment indicated, her body hasn't quite learned how to handle food yet; she had issues with swallowing food and now that's addressed, her gut has to grow accustomed now to processing actual food and moving through. From the beginning most of the advice we were being given was for smooth baby food (store bought is not my preference) and to add olive oil or some other fattening oil or additive to give her the extra calories. That wasn't working out very well for several reasons. Now that she is learning to eat, the best thing happened: she loves avocado! So now twice a day we have rice cereal and avocado. She is still not tolerating the bottle and we'll continue experimenting with various types of cups to help her move onto taking liquids as the average 10-month old. Baby steps towards where she needs to be.

10 months old

I also want to take the opportunity to thank my very good friends Charley & Lucie Bell. This dynamic duo are amazing people, amazing parents, generous friends, ambitious business owners - basically all around WONDERFUL and inspiring human beings. Besides being our friends for years, they have really gone above and beyond what I ever would have expected from anyone in trying to help us financially. Charley is behind the Scartissue Oddball Society (Madeleine's t-shirt) and The Antique Toys ("Dear Madeleine" song), and Lucie opened her dance studio, Room2Dance for discounted dance lessons for two full days. Each and every time I have thanked them, they basically refuse to accept my thanks with an "of course" and "no need to thank me." True friends, truly generous hearts, these two. I would certainly appreciate any patronage of their dance studio, the band, SOS, even the Covina Business District as a means of showing appreciation to the Bells. I believe they too will have generous gifts as a result of their selflessness. I love you guys, Charley & Lucie. Thank you!

NO EVIDENCE OF DISEASE!

"At some point in the future we will remember our biggest challenge and look at it as our biggest success." - Bianca Olthoff
I'm confident that one day, this Journey will be our biggest success: as a couple, as a family, as parents.
Today it was CONFIRMED, without any shadow of a doubt, that Madeleine has eliminated the cancer from her body. I knew it to be true; I had faith it had been done. Today it became official. 


Grow up, Little One! God has saved you for something greater. You have always been our angel, here on earth to teach us about His Love, patience, grace, and more than anything, FAITH. We love you Madeleine!!!!!

Day +18 & one week at home

This morning's check up was good; Madeleine's ANC count is holding steady for the most part and the platelets she received last Friday are hanging on at 95. All of these are good indications that she can remain at home still during her last cycle recovery. Next Thursday is her MRI, and we'll have an appointment with Dr Davidson Friday morning to read and understand the MRI results and talk about what's on the horizon thereafter. Her spinal tap will be the following week to again test the spinal fluid to ensure there are no cancer cells, and the belly ultrasound in the coming weeks. At this point, we don't expect to find anything but we definitely have to be sure. These tests will also serve as the new baseline that will be used to compare every scan from here on out as we closely watch Madeleine for any new growths. Remember, her rhabdoid tumor predisposition has the potential to rear its ugly head again, so we continue to ask for diligent prayers that God's mercy spares Madeleine from another incident. Every ATRT child is different, making it both easier and harder to focus on her individuality.

Before we left the hospital, Madeleine underwent a physical therapy assessment that has indicated that she is below average in her development for her age, which we totally expected, but not detrimental, & that they think a few months at home, especially with sister to help her along, that she could very well catch up to age-appropriate developmental milestones, if not surpass them. This is huge!! What an achievement for Madeleine! We will likely still seek an additional assessment and begin some physical therapy in the coming months when her immune system has recovered. She is however doing very, very well.

Madeleine is finally settling in at home. The first few nights were AWFUL because this kid would not sleep longer than about 40 minutes at a time. It was likely a combination of things such as her teething (the first two teeth FINALLY broke the skin!!) how warm it was in the house, and/or the white noise from finally running the AC. Whatever it was, Daddy and I were so happy to finally get some sleep, and we've been taking turns catching up every day. Tonight we watched her flip from her back to her sides, rock from side to side on her back, and lay content glancing at the TV just relaxing on the floor. It seems silly and incredibly ordinary; but she has spent so much time in a hospital bed with IV tubes that made it nearly impossible for her to have her "down time" that it's a kind of relief I don't adequately describe. 
Tomorrow afternoon I'm finally getting my hair cut. My hair has been longer than average for most of my life and I haven't had a haircut since probably finding out I was pregnant with Madeleine, I would say over a year ago. I know, gross, right? A good friend of mine has rarely had long hair and really loves it; she came to me a few months ago and mentioned she wanted to cut it and donate in Madeleine's name to the Locks of Love organization. Since she would do it in Madeleine's name, I told my friend Jacy I would also cut mine and donate in her daughter Talli's name, since she too has been undergoing chemo for an Ewing saracoma thigh tumor and has also lost all of her hair. Funny enough Talli had made a comment how one day she might want to have black, curly hair. So tomorrow, for Tallia Davis, I will be cutting about 12-14 inches. In this community of Little Heroes, I find it so important to mean what you say, and do what you promise. So curly black hair it is for Talli!!  I'll post pictures :)

Going strong

Madeleine enjoys standing on her own. She really only needs us for balance, her legs are real strong.
Still dealing with vomiting but trying to sleep it off.

Last Treatment DONE!

8 months old 6/2/12

The kid is doing great - Madeleine received platelets very early in the day and her transplant took less than 5 minutes Friday morning and she was able to come off monitoring earlier than in the past she was doing so well. She had a visitor, was playing and had a great afternoon nap. Her few days of feeling crummy are evidently over because she was doing phenomenal this morning: giggling, playing, and kicking her feet, with very little emesis and a smaller does of medication to control it. Her counts had already come down before the transplant, and as of today they were hanging on - a good sign. Today she began her GCSF - that's the booster for her white blood cells. Although she's essentially getting new bone marrow cells, the chemo is so debilitating that she needs that extra boost to help her immune system recover and protect her from long-term neutropenia. We now cross our fingers and keep praying that she wards off fever and infection and recovers quickly enough we can take her home and she can complete her recovery comfortably.

Today is Madeleine's 8th month birthday! and I forgot to mention that as of last Sunday, she's learned to shake and nod her head :) most kids don't start nodding until closer to 12 months of age. 


Milestones this week:
Shaking Head - check! ü
Nodding - check! ü
Last Chemo - check! ü
Last Treatment - check! ü
Changing Rooms - hopefully tonight :) 

11 Days Down, 17 to go

Jumping on her bed

Cycle 3 thank goodness is relatively uneventful, chemo wise. We chart her progress, procedures, transfusions and medications through each cycle to identify her trends and comparisons (remember we're not working; this is my "project") and since March 22 there hasn't been a whole lot to chart! Mama is very happy about that :) Based on my conversation with the doctors this morning, her counts should be improving already over this week. I don't want to jinx the possibility of us going home before the 28 days are up...Let's just say it could happen sooner than we expect.

The best part of this cycle has been watching her be a happy baby ~ she's playing with her feet, studying every face that she sees, smiles and talking to her regular nursing staff and doctors, wanting to look out the window and jumping! She's literally jumping when holding her up, I call her rubber legs. :) Her physical therapist has been very happy with her development and progress despite her chemo treatments and lack of weight gain. 

Sitting up watching Daddy

She prefers to stand and sit up where she can see your face,  though since this last discharge she's much more comfortable playing on the floor or in her bed rolling from side to side and over. Madeleine has been learning how to take her pacifier out of her mouth and half of the time can put it back; she's also finding new toys with random things: the blood pressure cuff and the kidney basin. :) It seems like getting out of the hospital the last time really opened her eyes to so much of the world she doesn't want to miss anything and she's absorbing everyone and everything around her. This explains now why she didn't nap during the day the last time we were home. Madeleine is such a smart baby! 
So, without further adieu, recent pictures of our angel!

Fell asleep playing with chipon

Playing with BP cuff

Twinkle Toes

MRI Results & Update

Thank you for your patience. We have been selfish over this weekend by not sharing the results of the MRI from Friday so we could spend as much quality time with the girls as possible.  

We waited nearly all day Friday to receive the word on the MRI. The attending doctor for the week indicated he thought the tumor appeared to be "a little smaller" which didn't resonate with me initially although Daddy was very optimistic and happy to hear that bit of news. Shortly thereafter our doctor came to give us the good news: the tumor which initially looked like a healthy, living, large organ now looks like a shriveled slice of dried apricot! It no longer appears to be connected to any of the surrounding brain tissues and is small enough that the neurosurgeon is confident he can go in and remove what's left of the tumor.

Getting this news, we were absolutely overcome with tears and emotions of joy, relief and happiness. It felt as though this whole last month we've been holding our breath, afraid to breathe and now we could finally exhale. It was so emotional! Even our oncologist is amazed at how quickly the tumor shrunk and was bringing members of our support team to see the MRI pictures. We were then discharged about 5pm on Friday and have spent the last 3 days home and with family.  

Tuesday morning we are taking Madeleine back in to have her labs drawn and we could be sent home the rest of the day or admitted for the surgery that is scheduled for sometime Wednesday. What we initially thought would be a shortened treatment plan as a result of having the surgery earlier turns out is not the case: Madeleine will still have to endure another round of induction chemo and then up to three cycles of the transplant therapy. This was extremely disappointing news. Of course we want her healthy as soon as possible and we understand if this is what she has to go through to ensure the cancer cannot grow back, then so be it. We were just under the impression that the surgery would in effect replace some of those chemo treatments by removing the tumor.   

Trying to sit up by herself

Since being home, Madeleine is overall a happy baby. She really enjoys sitting up, looking at faces and talking to you. After being in a hospital bed for so long I can't blame her. We all seem to be sleeping much better at home in our own beds too. She is having a little bit of trouble essentially "re-learning" how to eat. She gets frustrated very easily with not being able to get comfortable or latch properly and has taken to crying more than what we're accustomed to. It's important that we're monitoring her eating and urine so she is not getting dehydrated so it's been a challenge for Mom, especially when she's just as frustrated with and basically refuses a bottle. One day at a time.

So the plan: Labs Tuesday morning/Admitting sometime Tues or Wednesday/Surgery Wednesday/recovery 1-2 weeks likely inpatient. We hope to provide an update Wednesday after the surgery. 

Please continue to pray for Madeleine! We know she has angels watching over her and we know and trust that God is working a miracle in her by shrinking the tumor so quickly and by her strength and endurance. Her journey is still a marathon and we all need endurance to prevail.

A happy baby

We're almost done with chemo infusions and Madeleine is doing really well. The medicines are working, the last and yuckiest of them will be infused tonight. Daddy has been our rock, helping us both cope with her flu-like symptoms day and throughout the nights and reminding me that as she experiences the side effects, the tumor is getting a good whooping as well. The Drs have said her counts are better than they expect for this stage of treatment & she will likely be getting her first blood transfusion tomorrow. We continue to pray for her constantly, that the chemo shrinks the tumor faster than anticipated and she can have the surgery sooner than later. As of today, Madeleine is resting now & feeling okay. Thank you baby Jesus!