Wednesday, June 27, 2012

First Words

Madeleine has been saying "hi" and "hey" for at least a month.

Today she said "da-da-de". I guess I lost again to Daddy. Boo for that. But yay for first words!!!
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Tuesday, June 26, 2012

Tuesday: Day +25 & MRI Thursday!

The last few days Madeleine has been doing great! We were here at clinic for about 6 hours on Friday (day+21) but she got, as I call it, "the good stuff" because she always feels like a million bucks after being anemic & feeling just so-so. We went home and she bounced the afternoon away laughing & screaming (with excitement) in her activity jumper.
Saturday was big sister's 3rd birthday & we spent the day relaxing mostly and with family. Sunday Madeleine spent most of the day at her Grandma's house so Mom & Dad could spend time with Sister at California Adventure. Still in recovery cycle, it's not yet a good idea to take Madeleine out in public frequently & especially to places with a lot of people. Many kids get to do different things when in recovery, but Madeleine is different. Her tiny body makes any sort of infection or illness escalate rapidly so we must safeguard her as best as possible as well as keep her close to her health care team just in case. At only 6.7 kg (14.75lbs) things don't take long to work through her. We thank the Lord every day she's been doing so well.
On Friday I mentioned that it took 2 hours to find the right blood donor for her transfusion because of the antibodies she is making. Turns out this is forever; she will always have a narrower availability of blood donors to avoid allergic reactions to the transfusions. The blood center will begin advocating on her behalf the very few donors that are good matches by encouraging them to continue donating if not more frequently. We also discussed vaccinations. Madeleine's immune system will be too immature for quite awhile to get vaccines. As for the rest of the family, no live-virus vaccines, and we were strongly encouraged to consider the flu shot this fall, as Madeleine contracting a flu virus, simple as they may sometimes be, could be life-threatening to her. Unfortunately the docs know this from experience. We've never gotten the flu shots & haven't had the flu; this actually makes me very uncomfortable.

Keep praying for clear scans!!! 
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Friday, June 22, 2012

Waiting for blood: day +21

What a Friday already. The docs ordered home health for Madeleine so from now on every Thursday a nurse will come to our house to do a blood draw & provide those test results directly to our Dr. Based on the results, they call us if we have to come in. Madeleine is becoming anemic so she needs a blood transfusion today.
We've been here since 8am. Her "type & screen" was first; it's a test that confirms her blood type and screens for antibodies. Madeleine has had so many blood and platelet transfusions, 4 already this month alone, that her body is making antibodies to the foreign blood products. For the last TWO hours, they've been searching the blood bank for the perfect blood match to help prevent a reaction to the transfusion. Once it's been selected, it will take another two hours to complete. Sigh...... Momma is hungry & tired but at least little Madeleine is comfortable with a full belly and snoozing her morning nap away.
Her ANC came down to 1.2 but that's still good for chemo recovery. She will likely spend tomorrow resting and playing in the comfort of Grandma's home for Sister's birthday so Mom & Dad can take her to Disneyland and her one on one time.
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Wednesday, June 20, 2012

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 :)

Friday, June 15, 2012

Madeleine is Home

Madeleine's hospital confinement is officially over. This cycle was just as uneventful and efficient as the first - she was discharged on day+12, one day earlier than her first transplant cycle. On Sunday her ANC was still bottomed out, and by Monday we saw a little bump up to 300. By Tuesday, just overnight, her counts jumped up to 1,000! And again the following day she skyrocketed to 2,500! Although all of her counts have not yet recovered, we can at least know she's safer from infections and enough to go home.
As one of her docs stated, she's done just stellar. She has exceeded everyone's expectations overall how she has come out of this incredibly toxic, very aggressive treatment with little effect to date. Madeleine will have her post-chemo MRI in two weeks and a spinal tap in 3 weeks that will finally conclude treatment and confirm she is in fact in remission without any new tumor growth. That's the focused prayer now, that it all wasn't for nothing and no new tumors are evident.
Without skipping a beat, we're back at clinic this morning to check her labs as she will likely need platelets today. One thing about going home is the air has a lot more moisture on the outside so we've had a little bit of a bloody nose and some congestion to contend with. There's definitely a period of adjustment back to some form of normalcy for us all but one that is very welcome.
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Wednesday, June 13, 2012

Day 134

I'm sitting here on what could very well be our last night spent in the hospital for Madeleine's treatment.
WOW, WE'VE MADE IT...
And this evening, it became so incredibly clear to me how exponentially harder this journey would have been without Jeff physically by my side every single day. With very important appointments happening today, Annalise spent last night and most of the day with Daddy at home and they came to visit us in the afternoon. We haven't seen her in over 2 weeks and after 6 months of this, it has definitely taken it's toll on her too. We had so much fun, just smiling at each other laughing, playing, hiding in the closet. After a few hours it was time to go, say goodbye. Kissing them both bye bye, watching Daddy lean over sleeping Madeleine to kiss her nose and whisper good night, I walked out of the room and watched them walk down the hall hand in hand - and it hit me like a ton of bricks - I really don't know how parents and families make it through this being splintered. I'm choked up now thinking about how much harder it all would have been to do this night after night after night. I realize now why Jeff tells me that just by me being here with him brings him peace. Because to be without him I do not feel complete; I feel anxious and a little bit lonely, and like I said this is only the 3rd time in over 6 months we've spent the night apart with the kids.
There is another family I follow, the Adams family, going through something very, very similar. One of their sons underwent the surgery in order to be his brother's bone marrow donor. WHOA. They've also lost their daughter to the same disease for which they are currently treating their son. UNBELIEVABLE. I try to remember Ginger in my prayers every day because I know what I'm going through and I can't imagine being in her shoes. In their blog posting tonight she so candidly wrote about how awful hospital living is (she's right), how much she misses her other children (it rips a mother's aching heart out), the sight of her son's blood on his shirt and how frightening that can be (I nearly convulsed into a panic seizure when Madeleine did it after her tumor resection surgery) and about the difficulty of not being with her husband. Again, this resonated so heavily with me because they are fighting their son's disease together yet apart, something I feel that I would surely fail at had that been our only choice. Thank God our intense journey was only 176 days long. Somehow God provided for us to be together. And it has made all the difference in the world. For us. For Madeleine.
Please say a prayer for the Adams' family.

Saturday, June 9, 2012

3am

See what I mean! This kid wants to play with everyone at night. Sleepy...


Friday, June 8, 2012

Day 129 - a few more weeks

5th Cycle: 
Day 11 of chemo/Day +7 BMT
They are two different things though the same; Madeleine's protocol included induction chemo at the beginning so our cycles did not start at Day -1 for instance. Bone marrow transplant cycles do begin that way; conditioning chemo is scheduled as Day -4 and day 0 is the day of the transplant. 
Madeleine is kinda both. For the purpose of making an educated guess when her counts may begin to rise, they use the BMT day 0. The attending physician this morning said that an educated guess would be that given today is Day+7, she could likely be discharged between week 2 & 3, which would be the week of the 18th. And this is assuming Madeleine can continue without infection, fever or other incident. Our beloved Dr Davidson is getting married next weekend and we have missed our daily visits with her as she is ridiculously busy. She did come by this morning though to reassure us that although she may not be showing her face in the unit every day, she is constant contact with the attending physicians and follows along on Madeleine's charting daily. 
Things have been pretty uneventful & that's a good thing. The only thing to really report is that we finally got a hold of the emesis with the meds so she's not throwing up several times a day. We are feeding a little more frequently in smaller amounts to help with that as well. Madeleine seems to be feeling really good despite her counts being near bottom because she would rather stay up and play all day; her naps have been reduced to no longer than an hour and a half for both morning and afternoon naps. The last few days she's gone to bed earlier as a result. She's then sleeping lightly when they come in at 4am to do vitals and the kid is awake for at least an hour. Mom looks like this: x_x
I can't bring myself to fall asleep when she's awake, just in case she starts coughing up mucous I worry about her choking on it or aspirating. I'm having a hard time feeling rested because I can't catch up on sleep. And this cycle I think I mentioned I'm pretty much chained to the hospital since M has refused a bottle completely, so no chance of sleeping at home at night for me either. She's also been a little stubborn in trying cereal and food, so any bright ideas, please feel free to let me know. 
We're starting to get ready for life at home. Today Madeleine began her physical therapy assessments in addition to her regular therapy. We're taking advantage of the PT orders already written for her to give us a good idea after treatment so there's no significant lapse in time before she'll begin therapy once she's discharged pending all the insurance paperwork, etc. Looking forward to a quiet weekend...

Sunday, June 3, 2012

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.

Saturday, June 2, 2012

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 :)