June 6th
In support of
The Heath Family
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The Heath Family
Sky has had an okay day today and was very excited to see her brothers this morning. The afternoon she was very upset with mood swings from the steroids but we spent a while looking out of the window during which time she was relatively calm. She has eaten just about enough but wasn’t really ecstatic about any food except the jelly beans that I’d bought for me that caught her eye which she isn’t allowed! That was fun dealing with a toddler on steroids and saying no to the only thing she wanted.
We were hoping to be discharged from the hospital today but her neutrophils (type of white blood cell) haven’t recovered enough just yet. Bloods will be taken again in the morning and hopefully the results of these will allow us to go home tomorrow at some point.
Sky’s blood pressure has risen which is a common side effect of treatment and we now need to add a blood pressure medicine taken orally once per day in addition to:
Dexamethosone - Steroids taken orally twice a day
Famotidine - taken orally twice per day to reduce stomach acid production
Antibiotic that I can’t remember the name of - once per day through her central line (can be done by us at home)
Septra - another antibiotic taken orally twice per day only at weekends
Vincristine - chemotherapy drug delivered through her central line once per week via outpatient treatment at the hospital
Methotrexate - chemotherapy drug delivered on intermittent weeks via lumbar puncture into CSF
Ondansetron - anti-nausea medicine to be taken orally as and when required
Lidocaine-prilocaine - cream to be applied to her central line port location before arriving for outpatient vincristine treatment
All of the drugs are difficult to keep track of so we’re not looking forward to adding this additional one!
On a side note a couple of people have asked about donations and if we need financial support. The honest answer on that is that we don’t fully know yet. One thing is for certain that this will cost us several thousand dollars but we do have a max out of pocket with our insurance limiting to this manageable number. The reason we can’t be 100% sure is that we’ve been told that sometimes surprises can come if for example an anaesthetist or someone else involved in the care of Sky was “out of network” which basically means insurance may not cover all of the cost if any. Of course this is new to us with us being from the UK but hopefully this information helps people to understand where we are on that subject and I can add an update when we receive all of the final bills. For any money already kindly donated or if anyone is moved to send a donation our plan is to onwards donate all of the donations that we don’t need for medical bills (hopefully all of it) to a cancer charity. Hoping that clears up any questions about that topic but feel free to reach out directly to us if you want to understand more.
The Heaths
We were hoping to be discharged from the hospital today but her neutrophils (type of white blood cell) haven’t recovered enough just yet. Bloods will be taken again in the morning and hopefully the results of these will allow us to go home tomorrow at some point.
Sky’s blood pressure has risen which is a common side effect of treatment and we now need to add a blood pressure medicine taken orally once per day in addition to:
Dexamethosone - Steroids taken orally twice a day
Famotidine - taken orally twice per day to reduce stomach acid production
Antibiotic that I can’t remember the name of - once per day through her central line (can be done by us at home)
Septra - another antibiotic taken orally twice per day only at weekends
Vincristine - chemotherapy drug delivered through her central line once per week via outpatient treatment at the hospital
Methotrexate - chemotherapy drug delivered on intermittent weeks via lumbar puncture into CSF
Ondansetron - anti-nausea medicine to be taken orally as and when required
Lidocaine-prilocaine - cream to be applied to her central line port location before arriving for outpatient vincristine treatment
All of the drugs are difficult to keep track of so we’re not looking forward to adding this additional one!
On a side note a couple of people have asked about donations and if we need financial support. The honest answer on that is that we don’t fully know yet. One thing is for certain that this will cost us several thousand dollars but we do have a max out of pocket with our insurance limiting to this manageable number. The reason we can’t be 100% sure is that we’ve been told that sometimes surprises can come if for example an anaesthetist or someone else involved in the care of Sky was “out of network” which basically means insurance may not cover all of the cost if any. Of course this is new to us with us being from the UK but hopefully this information helps people to understand where we are on that subject and I can add an update when we receive all of the final bills. For any money already kindly donated or if anyone is moved to send a donation our plan is to onwards donate all of the donations that we don’t need for medical bills (hopefully all of it) to a cancer charity. Hoping that clears up any questions about that topic but feel free to reach out directly to us if you want to understand more.
The Heaths
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Virashnie Maharaj