Our humble thanks and stolen grace

Grace: Elegance or beauty of form, manner, motion, or action; a pleasing or attractive quality; favor or goodwill; a manifestation of favor; mercy. 

If you personally know Jeff; if you personally know me, you know that we are independent and strong-willed; at times even stubborn. We both have managed to provide for ourselves throughout our adult lives and never made it a point to ask for much, if anything at all. Knowing that we could not in good conscience "ask" for help, this blog was created as a gift from caring friends wishing to provide an avenue for prayers, communication, and gifts of kindness to help us stay by Madeleine's side throughout her treatment of this life-threatening disease. 

We have been overwhelmed, humbled, and literally brought to tears and prayers of gratitude by the generosity and kindness extended to us by friends, family and complete strangers. After so many years of remaining steadfastly independent, it has been a true testament of modesty to accept these gifts; because without them, we could be broken: broken in spirit and focus for Madeleine's needs. I believe with all my faith that our daughter is surviving this disease because of all the prayers near and far, and because we her parents are here, every moment of every day to show her love, support and comfort. When she doesn't understand what is happening to her, she understands her parents are here to hold her and love her.

It is with a very heavy heart that I acknowledge that some people would seek to destroy that grace, to utter words that would imply we are exploiting our circumstances or taking for granted what people have done for us. Because this burden is so great, we have friends who have offered to assist us with extending thanks on our behalf; not because we don't wish it ourselves - simply because there aren't enough hours in the day or emotional capacity at times to personally thank every single person. PLEASE, if you follow our story and have uttered a single prayer or contributed a single dime to help us - WE TRULY TRULY THANK YOU FROM THE BOTTOM OF OUR HEARTS. We will forever be indebted to you for your caring, generosity and kindness that we will forever seek to repay - because that is who we are. I personally have been taught that by not accepting a gift from someone who wants to offer that gift from the kindness of their heart that you in turn are robbing that person of a blessing, of those feelings of doing something nice for someone else. I believe that thoughtfulness and kindness are qualities and I wish to teach my daughters that giving is the right thing to do. At the expense of some people's sensitivity, I will not quit providing this blog. I humbly thank every person who reads this, prays for us, sends us a kind word or gift, or wishes us well and will personally do so even if it takes me years to reach everyone. Because I cannot allow negativity to penetrate the faith and strength that we have built; IT IS NOT FOR US - IT IS ALL FOR MADELEINE. I know that Jeff or I could never forgive ourselves if we did not do everything possible to try to save Madeleine, and right now that means not leaving her side - to go to work, to do fundraisers, to do anything. At this moment, she needs us here. If/when this changes, we will be the first to admit it and to hurry back to our employment/income responsibilities. In the meantime, we truly thank each and every person for everything. God be with you, God bless you, and I thank God for touching you by Madeleine's story.

Chemo: Round Two

The weekend and early part of the week were great. To be home with both of the kids and relax is the recharge we so graciously appreciate. Madeleine was readmitted Wednesday afternoon to begin cycle two  of 5 total. We expect to be inpatient again for the full cycle, planned for 28 days yet projected to be within the 21-28 day recovery as she did last time, also considering there is less tumor to battle now.

Wednesday night's infusions went off without a hitch and she was still a very happy, expressive and hungry baby all day Thursday. The bummer is that hour 0, or when the chemo has to begin each day, is 12:00 midnight :( so needless to say the first 5 days of treatment are the longest because we don't get any sleep. Thursday night was a roller coaster; we began as usual at midnight with the day 1 drugs, however day 0 drugs had already started kicking in, beginning the dry heave coughs. Going back to cycle 1, it seemed to hit her a little faster than last time. Naturally, that is because some nurses have been doing this longer, and some nurses just know what works better and best for some kids: last time, our nurse made a recommendation of prophylactic measures to keep ahead of the nausea/vomiting whereas this cycle, our nurse did not and the doctors had not initially written for all of those measures. 

At 2am Madeleine was up heaving and hungry. I had asked that they look back at the orders from last time and give her something to help her rest, as I recalled we were successful with that last time. Sometime between 2 and 4am the resident figured out what to give her and a fill-in nurse was trying to gingerly talk Madeleine into swallowing 7cc's of medication! This is basically a decent-sized syringe full of awful tasting stuff. Turns out this particular drug is very common and THEY RAN OUT of the IV drug and were having to give her the same anti-nausea medicine by mouth. Now I may not have a medial degree, but it didn't make a whole lot of sense to us to give a 4-month old baby a mouthful of yucky medicine when she's nauseous that she could potentially throw up. Why not explore another option of a similar drug that could be given through the IV? Of course she coughed up a portion of that medicine but that was after the fact we were made aware of the circumstance. And an hour later she was due for the other medicine to compliment the anti-nausea med - another issue with the timing. At 5:30am I was still up talking to our night charge nurse (who we LOVE) and trying to figure out with pharmacy what they weren't going to "run out of" on a holiday weekend....

The thing about chemo is that certain recipes work for a reason, and deviation from what works can be a heart-wrenching experience for the child as well as the parents trying to comfort that sick child. This is the frustration we have as her advocate; of course there will be things out of our control and we have to roll with those punches. Despite last night's challenges, I had a comforting discussion with the attending physician today. I feel comfortable knowing that they are aware of our expectations and how we most definitely feel a part of her care team and are not reluctant to speak up in order to have particular attention paid to one aspect or another. With this new medication she's receiving, she's now finally getting some of the rest she needs and she ate a little earlier today. Hopefully this med will work a little better to alleviate some or all of the wretching and heaving she had last time, and maybe even help her keep her appetite a little more. We're taking it one day at a time.

One Step Forward, Two Steps Back

Friday was Madeleine's 5th MRI. This one was to confirm the success of the tumor resection. Within two hours of completing the MRI, both the neurosurgeon and her oncologist were in our room to share the news. By most standards, the surgery would be considered a complete success with 100% removal: we learned there is a very small 1cm x 1cm piece of the tumor left in the cavity. Needless to say we were very, very pleased that Madeleine came out of the surgery just as she went in and had zero adverse effects from the surgery. The fact that there is still a small piece of tumor remaining does not discourage us and we are moving forward with the next cycle of chemo and counting on it to shrink/dissolve it based on the success of the first cycle. We were discharged late Saturday afternoon and she is now resting comfortably at home for her post-op period before we go back Wednesday to have her sutures removed and begin chemo. 

The second bit of news is that as a result of the rarity of the AT/RT diagnosis, Madeleine's tissues were sent to Children's Hospital in Philadelphia where they are leading the genetics research and testing. After several weeks, we learned the outcomes of her test. Madeleine is positive for a genetic mutation, the INI1 gene, which has been associated with rhabdoid tumors of the brain, kidneys and abdomen. This gene is apparently for tumor suppression in the body; it keeps the body from allowing abnormal cells to develop and grow. Madeleine's gene does not protect her. As a result of the mutation, Madeleine is predisposed to these tumors. Right now while she is undergoing chemotherapy for the tumor cells in her brain, it is not likely that she could have new malignant cells growing. Even after this nightmare is over, she will continue to be under very close observation every 2-3 months and 6 months until she is 5 years old to catch any new rhabdoid cell growth. After 5 years old, she should be fine, until she is an adult and is making family planning decisions.

This news is awful. I can't begin to describe how we truly feel about this. I feel that if we understand it and  come to terms with what we have to deal with, not unlike the prognosis given, we cannot dwell or even really talk about it. By not acknowledging this fact with words, we are protecting her; what does not come out of my mouth does not become reality. 

Today Madeleine is so much more like herself. She's had to be on a steroid since the surgery to control the swelling in her head that ridiculously increases her appetite and the nurses tell us is extremely mood-altering in older children, explaining her incessant irritability - this is her equivalent to throwing fits. She's nearly done with that medication and it will take some time for her blood pressure to come down completely as a result. She also had to be on an antibiotic that gave her diarrhea in every single diaper, poor thing. As of this morning, the wound protectant they gave me to use as diaper rash cream is working and she's not nearly as miserable from her raw bottom. Today she is talking and laughing, following your face better and staying awake for longer periods without being fussy. I hope the next couple of days at home she will eat like a horse and go back with some additional weight before chemo and be the happy baby we want and see. 

Surgery was a Major Milestone

This past Wednesday Madeleine underwent brain surgery to remove the decrepit remains of the shrunken tumor. The preparation by anesthesia and the OR nurses exceeded that of the actual surgery time! Our surgeon Dr. Lazareff was very happy with the surgery and indicated to Jeff that he had time to explore the surrounding tissues and he believes he was able to resect all of the tumor. She has been doing phenomenally well in post-op recovery these last 36 hours. The MRI to confirm the surgery's progress and serve as a new baseline for chemo was unfortunately not completed yesterday and is scheduled for this afternoon. The new MRI will tell us exactly how successful we have been.

So what does this mean? It has taken me some time to wrap my head around the concept that if the tumor was life-threatening, and now it's gone, what's the purpose of having her undergo additional cycles of chemotherapy? It's not unlike breast cancer where the tumor can be removed but the patient still requires therapy to ensure all of the tumor/cancer cells are destroyed. It's exactly the same with Madeleine. Right now while the tumor cells are responding favorably to the chemo, we need to "knock 'em dead" completely... or risk the tumor coming back AND resistant to the chemo protocol. The disease is what is very aggressive, in turn the tumor became aggressive and grew extremely fast. So while the surgery has been a huge success and huge milestone achieved, Madeleine still has a considerable journey ahead of her. However, because there is less disease and less "bulk" to combat and break down, her body should be able to handle the rest of the chemo treatments as well if not better than her first cycle. We are still very hopeful and faithful in her positive outcome of beating this disease! We are still looking at another 4-5 cycles of chemo and bringing her home in June/July free and clear and healthy.

Today Madeleine will have the follow up MRI and it appears the plan is then to discharge tomorrow allowing her to fully recuperate at home. Perhaps by the end of next week (Feb 18) or beginning of the following week, we will be readmitted for the next 28-day chemo cycle. Until then, we all get the break being home all together, life as usual :)