When not screaming, she would just lay there and stare off into space, not even looking us in the eye.
Hi all – You know that scene in The Godfather when Sonny gets the call from his sister, and he gets angry, slams down the phone and storms out in the car? Yeah, that was me today when I received a call from Nicole telling me that the medical staff had no intention of giving her a cat scan today despite Sally continuing to be in pain and now acting withdrawn. Nicole was so busy trying to keep Sally comfortable that she couldn’t argue with the doctors at the same time. I was at the laundromat with William (Thomas was at a birthday party) who had said his neck (aka throat) hurt when we woke up so was planning on taking him to the walk-in clinic after to rule out strep. Luckily our niece Vittoria grabbed him along with his insurance card and a permission note from me so I could rush into the city. I remarked to friends that I was heading to Sloan Kettering to pick a fight. I was infuriated.
I arrived to find a friend dropping off some goodies for Nicole as her husband was there to donate blood for Sally. As fumed as I was, it gave me a few minutes to calm a bit. Nicole updated me that they wanted to do an X-ray instead as it wouldn’t require anesthesia, and maybe a sonogram for the same reason. The doctor on call came in (who hasn’t been around the last two days during all of this, but we know and like her) to explain their thinking. The other tests made sense, but I simply stated that we were demanding she receive a cat scan today as that is what the team wanted and enough time had been wasted. After some back and forth where we even discussed asking for a transfer across the street to NY Presbyterian Hospital to get it, she agreed to work on getting an anesthesiologist but in the meantime wanted the X-Ray to rule out other potential issues. Fine.
Getting an X-Ray, this was just before she got very upset.
Sally’s belly.
So they did the X-ray right in the room and had a very good tech work with us. Sadly, Sally got so upset she puked up all of her food from the last several hours. The results showed that Sally had inflammation in her bowel and a slightly enlarged liver. The only way to figure out what is really going on? A cat scan. You know, the one we were supposed to get for the last 48 hours. The one that nobody wanted to call an anesthesiologist for as it wasn’t an “emergency”. The doctor updated us and said everybody was now involved from the surgeon (who we love), to the anesthesiologist, to the on-call medical team. Apparently it became a big deal. One thing that annoyed us is that our Leukemia Team was not in on everything. We also found out that the medical staff was making decisions without knowing that Sally’s treatment was altered last week as a result. Luckily, we were able to page Dr. Tom and get on the same page with everything and get his thinking, which calmed us down.
The entire team decided it would be better for us to wait until the morning for the scan when the pediatric radiologists, anesthesiologists, surgeon and our team were around. It annoyed us at first, having to wait again, but after this weekend of failure to get Sally what she needed, and having a radiology tech with a defeatist attitude last night tell Nicole that Sally’s situation and not getting the cat scan done “isn’t a big deal” we realized that it would be best to wait for the folks with experience with kids be the ones to do it. Not ones who don’t want to be bothered with a 17 month old (yes the head of Radiology will be getting an email about that). So Sally is only allowed to nurse from Nicole when she needs it til 4am. She is receiving all meds by IV and we can’t feed or give anything to her via her feeding tube as they want to give her stomach a break until they know what’s going on.
We’re angry that what needed to be done took 72 hours of our little girl going through increasing amounts of pain, all because it was a weekend. It took Nicole and I to essentially pick a fight to get her what she needed. As I type this it still amazes me, I’ve written this post in 15 minutes as I’m so heated about it. It reminds us how lucky we are to have our Leukemia Team from the doctors to the nurses, and how unlucky we are to always be admitted over a weekend when we have to deal with doctors and techs who have no experience with Infant Leukemia making decisions for her.
While all this was going on, William tested positive for strep throat. We promptly reached out to our neighbors the Tenwinkels and asked if they could bring Thomas to the doctor before they closed, which they thankfully did. Thomas had a slow positive, which means he’s likely developing strep. Both are on antibiotics, I came home to William with a 101 fever and miserable, and Thomas saying he was starting to not feel well. Again, luckily AnnMarie was able to come over and watch them til I could get home. We really do have an amazing system of support here, and can’t thank everybody enough.
I am buried at work, so have to head in tomorrow while Nicole’s mom (Sally Sr. ) watches the boys and I figure out a way to focus on my job while Sally undergoes her tests. If they see anything that requires it, Sally will be sent right into surgery, a big reason they also wanted to wait until the morning. Hopefully it’s something they can treat with meds, she already began antibiotics to be safe. There’s also a chance they find nothing and the search will continue.
99% of the time Nicole and I do everything to be calm and understanding, treating cancer isn’t easy. However, there are times we need to tap into that 1% and get angry to make things happen, and don’t regret it for one second. If it was any of those other people’s kid, I bet they’d do the same.
Please keep Sally in your thoughts and prayers, especially in the morning during her tests.
Matt
Many prayers for your sweet girl!
Roar, mama and papa. With you all in heart and mind.
You had every right to be angry. Hope you can finally get to the bottom of this tomorrow. And hope the boys are feeling better soon. Hugs and healing prayers.
Sounds like picking the fight was definitely needed to get them moving for you. Glad she’ll get her tests tomorrow (finally, smh). Will keep thinking positive thoughts for everyone!
We are praying extra for Sally in St. Louis!
No pizza for them!
It’s ok to get angry. You two are Sally’s best advocates! You can’t always hold everything in. My whole family said a prayer for you all tonight at the dinner table. Sending positive thoughts your way.
I feel your pain brother. As a nurse and a father of a child with mixed lineage leukemia, I know too much. They don’t hesitate much at our hospital, but when they have I demand to speak to the attending physician. I tell them “When in doubt, lets find out!” Get the labs & procedures done. Time defines the quality of outcomes in these situations. I hope all gets better soon.
Matt. As mum to a now 18yr old daughter with severe autism plus various serious medical issues I read your blog & cried. I’ve been fighting for my child for 18 years & yes we parents know better than any Dr. Even @ the famed “Sick Kids” hospital after 3 hours off trying to hold my child down while she ripped one IV out after another. Whilst I was bleeding from cuts & scratches a nurse came in & asked me to re direct her!!!!! All this cuz the didn’t know how to sedate her???????? This sadly was only a year ago. I wouldn’t repeat what I said to that nurse & I’m not proud of it BUT my child was sedated within 15mins & kept her IV in.
I don’t know how you guys are coping but I wrote this to let you know you’re not alone. Lots of us are pulling for you & dear sweet Sally. God bless you all xxx
What a rough weekend. I really hope everything is figured out quickly tomorrow morning. So sorry Sally is in pain and the boys are sick:-(
Man thanks for sharing Matt. Squeaky wheel gets the grease. For those of us on the outside it helps put things in perspective. Let us know if we can help with the boys. I’m looking forward to some interpretive dance moves ASAP.
“Take care to get what you like or you will be forced to like what you get.”
George Bernard Shaw
Your beautiful little girl will be In my family’s thoughts and prayers .
It sucks that Sally has waited so long in this much pain. It sucks that with all that was happening tonight, certain medical staff had the audacity to drag their feet until they were pushed by your verbal “big guns.” And it sucks that pain, Strep, exhaustion, fear, work overload, and even MORE pain have taken over your lives at this moment. But it’s great that you got furious. Sometimes you just need to vent…a whole lot…at the right people…and you picked a good fight! You demanded that things be made clearer for yourselves and you got things moving. And, even though there was the horrible frustration of a 72 hour wait, it’s so much better that Sally will be treated by the team who knows her and knows what SHE needs.
Matt, you and Nicole positively ROCK!!! You’re the best parents ever.
You do what you need to do! Pick a fight, yell, email, remain calm, whatever it takes! I find it inappropriate that a place like MSKCC not have a pediatric team available one the weekends:-(
Stay strongs. Prayers that they find the source of Sally’s discomfort.
You’re just mama and papa lions defending your cubs…will be thinking of and praying for your whole family….love to all….
Good morning!! Sally is a “Cutie Patootie”! Sally and your whole family & The Tenwinkles are in my thoughts and prayers!! You and Nicole are Sally ‘s best advocates!! You s know her best and yous know when something is NOT right with her!! Demand what you need and want for Sally and don’t be intimidated by any medical personnel!! You are doing a great job. I pray today-and everyday goes well for Sally!! May God help and watch over Sally!! God Bless yous
Please let me know where i can donate blood for your little princess!!!!!
I am praying everyday for you and for my little girl Sally. As an Aunt of many, it breaks my heart – it is not fair for babies to go through this. And that video of her in pain, well it touched me in more ways than you can imagine.
Please let me know if you need anything, even if it is to rock her to sleep one day.
Drs & nurses are wonderful but a parent knows their own child. I’m so sorry it had to get to the point of your anger but you and Nicole have to speak for Sally. Please keep us posted and I hope and pray that William & Thomas are feeling better and that you both can have a peaceful night & rest and that Sally feels better and starts to smile again. Thoughts and prayers continue for Sally and all of you.
Prayers that everything goes well for Sally and the boys get to feeling better soon.
How frustrating it must be for you to have to stand by watching your precious daughter in pain, and not get people to understand. So glad you were able to “your team” on board. You will be in my prayers. Best of luck in the morning. I recently came across your blog and am amazed by your love and tenacity you both display.
xxxxxxxxxxxxxxxxx hugs always help!