I suppose we all reach bittersweet juxtapositions in life where we find ourselves faced with an entanglement of emotions as sweet as roses and as painful as piercing thorns all at once.
I suppose you could say that is where we are right now with Brooke…
Before leaving home, we faced many unknowns. Brooke had caught a head cold which for anybody else would be just that, but for a child whose immunity is compromised by years and years of the suppression of cancer care, it gives a delicate balance of new obstacles to the already tumultuous battle terrain of the fight. In other words, it knocked her back significantly.
Her aggressive cough was aggravating her abdomen which is as tight as a drum from her enormous liver full of cancer, and in turn it gave her quite a bit of pain with every single cough… so much that we had to once again after 8 weeks off, give her strong, narcotic pain medication. The narcotics make her very drowsy and after our long drive from our quiet home on the ranch to the DFW metroplex area for Brooke to be a flower girl in Uncle Casey’s wedding, she was coughing more and in severe pain, quite exhausted and unfortunately unable to participate in the wedding. We got her to bed as soon as we could that night and gave her a couple days of rest at my parent’s house and I spent a lot of time crying and praying. At one point on our trip Brooke had said tome, “Mom… After I get done with this HAHA scan in New York, there are some schools I would like to try when we get home: swim school, baseball school, gymnastics school, dance school, you know… things like that.” My heart just ached for the hope she was holding in her heart already hoping this scan would somehow chance her circumstance. Even if it cleared every speck of cancer from her body, she still faces years of damage to her marrow that prevent her body from making adequate platelets and blood which would take months and years to recover from. At this point, between her intense coughs and painful delirium, we didn’t even know if we could get her to the plane to go to NYC.
We sat at her bedside and cried and prayed intensely that she would still be able to make it to NYC for the hopeful scan study. She spent all day last Saturday at the hospital ER – she was literally gone from 11am until 9:30pm – so that she could get two bags of platelets transfused for her tiny body to be “flight ready” or able to safely fly inside a pressurized airplane cabin without terrible risk of bleeding. A clearly inexperienced ER doctor argued with Beau that they did not need a type and screen for platelets only transfusion which delayed things extra hours as she finally figured out from the local blood bank that my husband was right and they had to re-draw blood from Brooke for it and wait more hours.
By the time Sunday morning rolled around, Brooke was still coughing but not quite as badly, her pain was being better managed, and she was more active with the narcotic pain relief on board. We felt she would be comfortable flying, so we drove Brooke on to the airport in Dallas.
While we were there inside the airport to check in, a young,clueless TSA agent didn’t quite seem to know what in the world to do with Brooke on her portable IV pump of fluids and although it wasn’t a problem just two weeks ago for her to get out of her stroller and carry it through the metal detector at both Corpus Christi and Phoenix airports, this agent just had her stand off to the side, waiting, because he literally didn’t know what to do. After about 10 minutes of standing there with him ushering other people through, Brooke began to cry out that she was hurting from coughing and standing and wanted to sit back in her stroller. But they had already taken her stroller to the other side… where Daddy had it waiting for her. The TSA agent still would not let her through and I demanded he call a supervisor or let her through. He just looked at me, ignoring Brooke’s tears and continued to let other people through that were behind us –even they seemed uncomfortable about it! At this point Brooke was very tired and full of pain meds and emotional and she was standing there with tears streaming down her cheeks saturating the paper mask protecting her nose and mouth from germs. I glared at the agent and very loudly, I begged him, “PLEASE, she is a child with cancer, she is uncomfortable just standing here and she is hurting and needs to sit down. There is no reason to put her through this! PLEASE… just let her walk through with her IV bag. They did it in Corpus and Phoenix and it wasn’t an issue just a couple of weeks ago. Why is this an issue here? PLEASE let her come through!”
I could see Beau with the other agents on the other side where he had already been cleared and I could see he was fuming mad saying something and pointing over at us and I was actually worried he would get really REALLY upset and that we might get pulled aside and delayed further. The young TSA agent just stood there,dumbfounded, and said again he could not let her through and continued waving others through who at this point were basically starting to stand there and not go through themselves as Brooke leaned against me standing there sobbing with my arm around her shoulders to console her!
About that time an older, much kinder TSA agent came up behind the idiot one, and said excuse me, and he opened the glass door next to the security thing you walk through and said to Brooke, “You may come on over here young lady. It’s okay.” She stopped crying and looked up at me with her big, green, broken-hearted eyes full of tears and fear and pain, and I told her to go with the nice man – that it was going to be okay. Then I went through the security reader next and we both went immediately across to Beau on the other side where her stroller and our carry on items were all waiting and got Brooke back into her stroller as she began coughing in pain again. At that point a female lead supervisor TSA agent approached us and apologized stating to us the other young man just didn’t know his job and that next time we didn’t even need to make Brooke get out of her stroller (which he had also forced her to do). I looked back over my shoulder and the young TSA agent was no longer standing there working. He was no longer in sight. I can only imagine they took him away to go over procedures and protocols with him as this was a very publicly traumatic and embarrassing experience for Brooke unlike any she has ever had at an airport before. I changed Brooke’s wet mask for a new one while helping her back into her stroller and then we were off to find our gate.
At our gate, we got to meet someone very, very special. His name is Daniel and he works for Southwest Airlines, at the Southwest Airlines headquarters in Dallas, next to the airport where we were departing from. Daniel had made a special trip over to the airport with the special purpose to meet Brooke as we had wanted to meet him in person to tell him thanks. You see, before we even booked our flights,we had planned to use the flight points we have accumulated over the past three years that we have earned with our groceries, gas, medications, lodging, or any other expenses we must put on our credit card. We were disappointed to learn that we did not have enough points to fly all three of us round trip and began reaching out to friends and family to see if they could possibly share points with us. The response was overwhelming at how quickly some people wanted to help transfer points. But unfortunately, we learned that points were not free to transfer and would cost people $1 for every 100 to transfer them to us and with the amount of them that we needed, the figures weren’t adding up in our favor. In fact, our full round trip flight required 194,000 points and we didn’t have anywhere near that amount. The cost of the flights for all three of us round trip at the lowest fares was going to be $1944 which is nearly a whole month’s salary for Beau and at $1 per 100 points transferred it would cost other people too much money just to transfer over free accumulated points. That expense was so high we had hoped there would be a way and laid itin prayer. Thanks to loving, caring, generous friends, the cost of the flights were incredibly deferred… and then my phone rang.
Our special friends Alana and Marc had decided to use their Twitter account to try and help us to find help and in doing so, they tagged @SouthwestAir and…. they responded on Twitter that they wanted to help!
So they connected and next thing I knew, my cell phone was ringing and it was Daniel from Southwest.
He was able to lower the fare of our flights for Brooke’s special travel so that it only took 36,000 points for each of us to fly and we only paid the tax on the flights which had been now covered too by the generosity of others. It was so incredible that when I got off of the phone I just sat there, lifting prayers of gratitude and crying from the compassion and help they gave to Brooke… so much Love!!
Little did I know that when we met Daniel in person later at the airport, especially right after such a traumatic experience through security for Brooke that it would mean even MORE to us for her. Here he was, this incredibly kind person, who had an opportunity through his work, to make a HUGE impact in our lives and most certainly did by opening this door for Brooke to fly to NYC for the opportunity of this scan study. Kind people are everywhere and it is always such a blessing to get to meet them in person. He even spoiled her extra with a TJ Love airplane squishy pillow and a super plush warm blanket… two special items we actually did not pack for Brooke on the trip. She has hardly let go of them since. TJ Love is even with her in her stroller to and from the hospital… and she has slept with him every night. For her, TJ Love means compassion from a friend named Daniel, to help get Brooke to the city to try this study that even she holds much hope in.
Our drive to the airport though Dallas was 8 lanes on our side of virtually ZERO morning traffic.
Our flight was smooth as butter.
Our arrival was the best of all because as we were headed to the baggage area, there with a special sign that read “Brooke” was Brooke’s very special friends Timmy and his sweet momma, my friend, Maureen.
Not only did they come all the way down south to Texas to be there for Brooke’s birthday, but they also drove through the beast of NYC traffic to come and pick us up and bring us back through the city to the RMH of NYC then spend the evening visiting with us. Brooke was pretty exhausted and still coughing a lot on the trip and barely wanted to walk even while her friend Timmy was with her.
When Maureen found an open spot on the side of 73rd street to drop us off, it was amazing… there are hardly ever spots here to park. She had the luxury of two spots together being open and to get her Jeep just where she wanted it to be curbside. When I opened the door,stepped on to the familiar sidewalk after 3 years and 5 days, I looked up, saw the RMH, took a deep breath… and nearly collapsed.
The sights and smells and sounds were simply that overwhelming.
After so many years of being gone, after so many days of being trapped in a place that was to us like the land of Oz but really the city of New York, and dreaming of nothing but the green grass of home, it was easy to leave and never look back in 2012, since after that we chose to go to Dr.Sholler in Michigan.
I could smell the horrible wonderful smell of New York City infiltrating my lungs with the stench of the dirty streets mixed with the sweetness of the cool air and the richness of nearby restaurants and beautiful blooming apartment bushes and even the corner store with loads of fresh flowers overflowing the sidewalk stands next to the piles of rat infested black garbage bags piled along the sidewalk for pick up… all mixed with the smog I could already feel clinging through the wet air to my cheeks and the constant sounds of the bustle of honking taxis, squealing bus brakes, and the never still, never sleeping, always energetic city.
It was a forgotten, but familiar sensation to say theleast. A place I never want to have to be for Brooke’s circumstance, but a place I am beyond grateful exists… hence the juxtaposition of our temporary transient existence here once more.
Beau and I knew that if Brooke was like that going into the NYC clinic the next morning, that there was a strong possibility she might not be cleared to qualify for the scan study… although she was a bit better than she had been when we left, she was still not in very good shape with her bad cough and her feet had begun to swell in addition to her abdomen, which we weren’t entirely sure why.
Just to get us to NYC was really a path of wide open doors. God made it seem easy.
We had many friends and many friends of friends that reached out and found ways to help us, both in tangible ways, and through the power of prayer. Until just before we got to NYC we didn’t even know where we would stay, but had two things come up – an offer from a brother of my dad’s friend to stay with him in his NYC apartment along with a very urgent helpful pair of board members of the RMH that helped expedite and get us into a room here at the RMH. We were so delighted when we called Sunday morning and were given a confirmation that we indeed had a room here at the RMH of NYC, as apparently the room space has been extremely limited with families being turned away to hotels costing anywhere from $300-400 a night, and we knew this was a beyond blessing to be able to stay so close to the hospital. On top of that, we were placed in the EXACT same room as we had onBrooke’s very first life-saving trip to NYC when Dr. LaQuaglia performed God’s miracles in her body by completely removing her original tumor that in 2011 wrapped her aorta and compressed her left kidney, hardly responsive to chemo at all.
We are in the exact same room…
But now it is very different.
The cracks with ants in the walls are all gone, replaced with cleanly painted fresh colors and accent walls with modern lighting. The two small twin beds were still there –almost like they were three years ago, waiting for us to shove them together to make a regular full bed just like we did before, but instead of resting on vomit stained gross scratchy carpet requiring a huge heavy vacuum falling out of dislodged wooden closet doors on broken rails, there are faux dark mahogany wood-like floors and a Swiffer sweeper inside a mirrored Closetmaid-looking closet organized interior. The dusty red velvet couch we had to cover with blankets that was overlooking a terrace four floors down with a wide open window that a small child could fall right out of, has been replaced with an easy-to-wipe-clean fold out vinyl fake leather sofa and a safety latched window that only opens a few inches. The bathroom you didn’t want to step into without a large container of Clorox (and even shower in flip flops after that),has been given a new sink and beautifully clean tiled walls and floors. The room – the exact same room – is now a much more comfortable place to be.
And we are here.
In the exact same room.
We are a few blocks from the hospital… which is so helpful with her urgent needs and transfusion dependency and especially since she is the second child to even try this scan study.
Why did we come so far for “just” a scan?
It was because of God, a good friend named Dena, and another little girl with neuroblastoma.
I was literally in the middle of a prayer when I got a message from my friend Dena who, through her parent led nonprofit foundation,funded this study. She had found out about the first child, who had been sent home from another hospital with head to toe cancer in her marrow, with no further hope. The other child is 12 and I believe she was diagnosed at age 10… like many Neuroblastoma ridden children are… just out of the blue as it emerged its ugly head in her life. She did this scan study, which is radioactive or “hot” Hu3f8 antibody, and it cleared all of her marrow except one small spot in her pelvis. After 8 weeks she remains stable in that spot and her mother told me it was nothing short of a miracle by God.
The doctors have told us not to expect this with Brooke. They say it is a low dose antibody, and every child is different. They say it is just a scan… but we know what happened with the other child and so we hope and pray for some effect for Brooke. Because it is just a scan study and not therapy, she has been able to remain on her personalized medicine therapy with Dr. Sholler… This is why we brought her here now.
After arriving in the city and getting Brooke off to bed, she was resting peacefully. But here is the amazing part. At 4:45am EST (3:45am Texas time) light was tricking through the city-scaped sky and into our room.
Brooke literally hopped up out of bed, saying, “I’m in New York City! Let’s get this day started!”
I nearly rolled off of my pillow straight onto thefloor! This child who had been so sick with a terrible cough causing additional pain to her liver cancer and abdomen,was no longer in and out of drowsy pain, but digging in her suitcase for an outfit to wear and get the day started… and head off to see her old doctors hereafter years of being gone. She still had a cough but it wasn’t as bad and she high-fived her old doctor as she walked into the exam room. Such answered prayers!
We signed papers for the trial and Brooke received blood and platelets on Monday to get her body ready… for the Tuesday injection of the hot humanized antibody for the scan study.
Within the first hour of the injection on Tuesday afternoon(when I had to step out of the room since I am expecting and it is radioactive), Beau called me. Brooke was in pain. She said her pain was a 6 out of 10, and in areas she has had active cancer before. He called the nurse and she gave Brooke low dose IV narcotic pain medication (hydrocodone) and a prescription for more. Brooke needed more orally after that and it just basically knocked her out. She was in and out for the rest of the evening, even with friends over pizza, she slept in her daddy’s lap most of the dinner. But she was out of pain….
Her pain medication was needed the rest of the night on Tuesday and all day Wednesday as her scans continue daily to watch her body as the radioactive isotope is fading away, but we won’t know results of the scan study until we meet with her doctor on Friday to discuss them. Fortunately this morning she has not yet had any pain, although we think the narcotics have had some adverse effects on her and we are glad she hasn’t yet needed them today. Her abdomen remains distended and her doctor here believes it is from her liver, but we are asking more questions as related to how she is feeling and doing. We did learn today her electrolytes have bottomed out, as did her platelets and blood counts, so she is going to be in the hospital all day for transfusions and electrolyte replenishment, and back on fluids tonight while she sleeps.
There has been a sweet surprise set up by CandlelightersNYC and friends and we are quite hopeful she will feel up to going out for the surprise, but all we can do is take things hour by hour right now, and hope that she will improve… and that Friday’s results will be miraculous for her. We do ask that you please say a prayer for a few of Brooke’s friends who have not had such great news this week or who are recovering from intense surgeries, and also for a close friend of mine whose son’s birthday would have been this week,as it has been very hard on her celebrating her son’s birthday without him here.
We heavily appreciate all of the love and prayers and will update as soon as we are able to with more.
Sarah, thank you for this verse and prayer, it is carrying us all through everything this week, and always:
Now to Him
who is able to do far more abundantly
than all that we ask or think,
according to the power at work within us,
to Him be glory
in the church and in Christ Jesus
throughout all generations,
forever and ever.