The First Month of Diagnosis
Hopefully, you are able to take your child home within the first month. Your family will have to enter this strange space of walking into a home that looks exactly as you left it, but you are now different.
Before you leave the hospital, having a child whose immune system is weakened by chemotherapy (termed ‘immunocompromised’) is a challenge in and of itself. You will find that the biggest threat to your child’s health is not the chemotherapy or medications, but the threat of all those kid-loving viruses and bacteria that can quickly take over.
Preparing Your Home
In our index section and on our app, we have an easy checklist of things to do to prepare to come home that you can give to family and supporters and hopefully take off your plate but here are the biggies:
Mold is dangerous for the entire family, but even more so to a child with an immune system that is not up to par. Examine basements, ceilings, and piping for any traces of mold and have it remediated immediately.
Houseplants and Flowers:
That time-honored cheer-up technique is no good for your child. Encourage well-wishers to supply balloons or fruit baskets instead! Houseplants and freshly cut flowers can harbor mold spores and bacteria that can infect your child. Rehome them, and make sure you put a kind note out to supporters that while the thought is appreciated, flowers are not a good choice for your child at this time.
If possible, schedule a deep cleaning of your carpets and drapes before you come home. You may find that beyond the risk of illness, your child may also be more susceptible to dust and allergies. Make sure if you do have the carpets cleaned that it is done well in advance of homecoming to avoid any irritants caused by the cleaning.
There is new research linking exposure to pesticides to pediatric blood cancers (citation). So pass on the pesticides in and around your home as much as you can. Consider natural and safer alternatives to killing weeds and pests (insert recipes?).
If anyone is willing to organize a cleaning party for you, by all means, encourage them! A cleaning service is even better and a wise choice if you have any funds to spare. A clean home is safer for your child and lessens stress on you and your spouse by freeing time to dedicate yourselves to taking care of your children.
Step One - The Binder:
The hospital may have provided you a binder, if so take advantage! If not, lucky you–you get to organize it however you like! For examples and printables check out our website chemoandcrayons.com.
- Sturdy three ring binder – 2” is ideal
- Business card holder sheet – get business cards from everyone you will be interacting with, doctors, physical therapists, social workers, nonprofit representatives, and medicare/insurance contacts.
- LOTs of colored tabs – buy twice as many as you think you need so you can continue to add categories as things change
- A pocket page for the back
We found that the first volley of information was easily organized into about 8 sections.
- Consents and legal paperwork
- Cancer information
- Chemotherapy / treatment information
- Daily counts log (Usually items like a “Complete Blood Count” (CBC))
- Full bloodwork sheets
- Medications and Dietary Supplements
- Questions for The Care Team
As you progress through treatment, you may wish to add additional tabs on physical therapy, nutrition, blood donation information, fundraisers, and nonprofit information (camps, wishes, special activities). Your binder is your “go to”, your rope to sanity through this, your outsourced memory, and a great place to keep questions! Slide a couple of extra sheets of notebook paper or make a new tab and jot down questions for doctors appointments.
Step Two - The Bag of Everything:
There will be several necessary bags that you will start to keep prepared for your journey, the first is the “bag of everything”. This will be your go-to clinic bag, hospital bag, and basically take it everywhere your child goes bag. For those of you who packed a hospital bag when you (or your spouse) was pregnant and had it waiting by the door, this is a similar concept. We have examples of the bag or everything on our website. Make sure there are lots of pockets for all the little things and that the top closes – spills and a screaming child are never fun!
Here are the basics:
- Little treats
- Extra numbing cream
- Change of clothes
- The Binder of Everything
Step Three - Establishing Schedules:
Depending on your diagnosis each family will spend varying amounts of time inpatient. Establishing work schedules and child care are definitely tricky. If you have a good support network use them for what you need most! It is often hard to ask for help with childcare for other kids and a frequent regret we hear from parents is guilt for shuffling around siblings. If fundraisers are being organized on your behalf, seriously consider applying part of the funding to a steady babysitter or to offset some costs for friends or family who are caring for or providing transportation for other children.
Most workplaces are extremely supportive of parents of sick children, however, that doesn’t always last. Make sure you schedule a meeting with your human resources department and supervisors and give them as much information as you can on diagnoses, fill out any required paperwork to establish your need for medical leave, and try to be as realistic as you can about the needs of your family.
Fortunately, many workplaces are becoming more and more flexible with time and work from home arrangements. Take advantage of these as often as you can. Your child may be unable to attend daycare but may also be sleepy and be recovering and provide some time for you to work and save time off for inpatient stays.
The balance of care is a continuous issue for parents. Very often one parent stays home and handles the bulk of appointments, medications, and inpatient stays. However, while I recognize the benefit of having at least one well-rested parent who is able to function well at work, remember that this experience goes well beyond the average newborn phase. Pediatric cancer and the stress that comes with it is intense and inescapable.
In the first month, it is hard (often particularly for mothers) to accept being away from your child for even a second. You can certainly stay with your baby for every minute of every day if that is what you need to get through this, but don’t exclude other caregivers from spending that time as well. You will need the backup, you will have nights when you have to get some sleep to function the next day, you will need time to cry and someone to rely on.
It is really really hard to ask for that help once you have reached the breaking point and once you have established a pattern of handling everything on your own. Start now by doing as much as you can with someone else. Allow friends and family to attend appointments with you, take turns with your spouse staying the night with your child and remember, your other children need to see you too.