2024…thus far
We had hoped our last update & the drama of Jack’s MRI was going to be it for the start of this year -
unfortunately, it has been a rough couple of months.
Since January 20th - Jack’s lungs have struggled…
To summarize, Jack’s baseline blood oxygen levels are 93-95 on room air (when healthy) and to maintain those levels while asleep (with his severe sleep apnea), he needs BiPAP and 0.5L of oxygen.
Our daily routine is checking Jack’s oxygen levels & and doing maintenance therapy;
saline nebulizers, VEST treatments, inhalers, breathing tools etc…
when Jack is healthy, we do this before school and after…when he is sick, we do this every few hours.
Yes, it is a lot & quite exhausting, for him & for us.
Typical early signs of trouble start when we are all sleeping…
Suddenly, we are awoken by the sound of his puls ox beeping - yes we are back to using a baby monitor in his room so we can be aware of any noises.
At times it happens simply because it fell off, other times it is because he bent the wire & it’s not a good connection.
But if we have troubleshot all potential reasons & his levels are still low - we increase the oxygen levels on the concentrator. We’ve been told that we can only give him up to 2.0L max and if he needs more than that - to take him to the ED. The drop in oxygen happens fast - and we know if we’re checking multiple puls ox & we can’t get him into the 90s, even on 2.0L we have to get going…
This cycle has happened six times since January 2oth - yes, six times.
All the trips to the hospital are the same, we roll into the ED with an oxygen tank attached to Jack.
They typically rush us back to a room - they don’t want cancer patients exposed to sick kids in the waiting room. In the ED, we refuse bloodwork until they send the ultrasound/VAT team because they CAN NEVER find a vein on Jack. This usually takes a bit because they argue or bring in someone who is learning - yes I know it is a teaching hospital, but for Jack, who has breath holding episodes & low oxygen, we say no but they insist. It’s a back and forth, it really angers us as you can imagine. Also, if you ever find yourself in this position with your kiddo - don’t be afraid to stand your ground. Kids do not need to be tortured… they have the tools to make it easier and more comfortable, so just ask them to do it.
Anyhow, I digress, they do bloodwork, X-ray, viral panel and we retell Jack’s oxygen story over & over again.
If Jack tests positive for a virus, they admit us - because viruses often get worse before better.
But, he has only done that twice.
Once last January before we knew about his tumor & then this January for rhinovirus.
Every other time, no virus was detected.
If Jack’s lungs look bad on the X-ray, they admit us -
because, well, I don’t know other than they want to monitor him.
We usually spend about 10-12 hours in the ED & then we get admitted to the oncology floor (11S).
There we usually have a day-time nurse who knows us & Jack’s oxygen history.
They typically get us discharged for home care by the afternoon the next day.
They completely understand that we - as his parents - are the ones doing this all the time.
And we know Jack better than anyone…
While we’ve only spent a night or two admitted (each time) this year - it makes us wonder if his doctors have given up on trying to fix the underlying cause or if they just can’t figure it out.
It leaves us confused and scared - and it seems that it is worse & not better, ever…
no matter what we are doing.
I’ve talked to Jack’s pulmonologist at length - and I believe she really cares about Jack and I trust her.
This is what she’s told me we know…
Jack’s lung infections are additive. If you have one, and it doesn’t heal before the next, you are left worse than you were to start. This could be the truth about Jack’s case for over a year now - maybe longer?
While we are doing 99% of liquids through his g-tube, if he has a cold or allergies, they believe he is still silently aspirating these fluids & mucus.
I’ve been assured that these infections can and will be fixed - it just may take time.
She has told me that lungs are remarkable organs especially in young kids.
The alternative is not something we are really discussing because we can’t confirm or deny it. All we can do is keep that in the back of our mind as a rare & unlikely reason for his lung health.
That last reason could be that his chemotherapy meds are causing interstitial lung disease.
But the only way to prove this is to do a lung biopsy - the risk of Jack’s lungs collapsing during that procedure are very high. That would put us in really bad trouble…
To add, there are no other medicines available for Jack’s tumor type that have different side effects or are more effective. So, we are ignoring this for a minute until we get the bronchoscopy done in a few weeks.
Until then, we continue our therapies - we continue antibiotics, yes I hate them, but they really work for him. When he is on them, his oxygen levels are 96-99!
Which we hardly ever see… so yes, we are chronic antibiotic users right now.
Today is Day 6 of health - and he is loving being back at school & running around the neighborhood with friends.
You might have seen that we took the kids on our annual trip to 30A - in Watercolor, Florida - and had the most amazing week. The first two days Jack needed oxygen on the beach, but he made a miraculous recovery while there! Maybe it was the warm air - maybe we should move to Florida?
Either way, enjoying life when we can is what we are trying to do.
Is it hard? Yes.
But we do not want cancer to define us - but to remind us to enjoy the good days & be present when we have them.
Anyhow, please keep praying for Jack -
for his lungs to heal, for his vocal chord to gain full mobility again, and for his tumor to shrink!
Thank you for all of your support.
PS - If you have not seen, my wonderful friend, Cait Marino, has started the process for May Day Baskets at my flower shop, Peaceful Petals - you can register here & be a part of the fun tradition she and our friend Liz started last year)
<3 - The Taylors
