This is going to suck. Not in the same way that the last four months have sucked, but it is still going to be really, really rough.
Imagine for a minute your typical cancer patient undergoing chemotherapy. Sick, tired, pale, nauseous, weak, in danger of infection. Those are the effects of the chemo drugs Anna will be taking for the next six months. After all that she has already gone through. Plus, she will continue to be undergoing whatever rehab she can physically tolerate.
As much as we have avoided the thought during the last several months, we now have to embrace the fact that we are one of "those" cancer families. We are the parents of a medically fragile daughter. Now that Anna is living with us in our home, we are aware of her blood counts and her heightened risk of infection. We will learn the pattern of the damage and healing after each chemo treatment and know when to avoid any type of crowds, thus any possible exposure to infection for our immunocompromised daughter.
The chemo drugs themselves do much damage to a body's healthy cells, in addition to the cancer cells We will continue to learn about these effects as Anna's treatments continue and will share what we know as we learn it.
In terms of blood counts, the three main types of blood cells looked at are red blood cells, platelets, and white blood cells. When a patient's hemoglobin is low, they get a blood transfusion; when their platelet count is low, they can have a platelet transfusion. Anna has had both of these during her hospital stay and she may need both on a regular basis.
White blood cells are the ones that fight infection. Different kinds of white blood cells fight different kinds of infections: viruses, bacteria, fungus, etc. You can't get a white blood cell transfusion, but you can get a chemical that boosts white blood cell production. Every cancer patient gets this drug immediately after the kind of chemo that Anna is getting during this phase. However, her blood counts will drop their lowest about 7-10 days after her treatment before they start to recover. Then her body is allowed to continue to heal for another 14 days or so before she gets her next round of chemo.
It's not a matter of if cancer patients get sick; it's a matter of when they get sick and how sick they get. So we will do our best to prevent any kind of fevers we can, but we realize that they will happen, and that Anna will have unexpected hospital stays in the coming months. The fact that she had a ridiculously healthy immune system before 2014 means absolutely nothing right about now.
When Anna was discharged from the hospital this time, she came home with her port accessed. (Early on, she had an infus-a-port placed so that she did not need to have a new IV every time she needed medication given or labs drawn.) What this means now is that Matt and I are trained on how to care for her port so that Anna can receive IV fluids overnight at home. In addition to the other medications, the diapers, the feeds, the physical transferring, etc.
Basically, Anna has a lot of medical needs. Caring for three young kids is a lot of work. Caring for a cancer patient is a lot of work. Caring for both is even more.
Anna will have weekly, or even bi-weekly, appointments at the hospital to which I cannot realistically bring a toddler and an almost kindergartner along. Kate, Ethan, and I have a handful of normal check-ups in the coming weeks to which I cannot realistically bring an immunocompromised, wheelchair-bound, medically fragile, almost seven year old along.
We have come to the realization that we cannot do this on our own and we can no longer rely on the goodwill of those around us. We are in the process of looking to hire someone part-time to help us in the coming months; someone special who would be a bit more than a mother's helper, but something less than a trained nursing assistant. (Melissa will not be available this summer to us.) I have a feeling that God has someone special out there for us, but I have no idea right now who that person is. I hope that He guides that person to us soon.
In spite of feeling a bit like crud, Anna's personality showed through at the hospital. On the drive in on Tuesday morning, she told me that she was kind of looking forward to going, knowing that it was only going to be a short stay :) I just gotta love this kid, and I honestly love having her home, even with all of the work.
Time for prayers
Thanksgiving
Please thank God that we are home as a family.
Please give thanks for green grass, blooming flowers, budding trees, and singing birds.
Please thank God for a short, smooth hospital stay.
Please give thanks for all of the support and flexibility our family has received so far.
Please thank God for the exceptional care Anna and our family has received at the hospital and beyond.
Requests
Please pray that Anna experiences mild side effects to her current phase of chemotherapy.
Please ask God to lead the right helper to our family.
Please pray for Anna's care givers at the hospital and beyond.
Please continue to pray that Anna's treatements are 100% effective.
Please continue to pray for strength, peace, patience, rest, and wisdom for our family.
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2 comments:
Sara, no matter what you write, we love to hear from you! It helps us feel more connected to your family. I have such comfort knowing God's holy angels are there with all of you!
Sara, I was overjoyed to see your entire family at Kate's recognition evening. I hope you enjoyed the music and the enthusiasm of that small, but faith and spirit-filled group! Kate look so proud!
The day trips to the hospital are just that: day trips. We have found that it is always longer than you think it will be. Out-patient labs, waiting for labs before treatment, and then finally starting treatment just takes a long time. I think you have a good idea about some extra help. Continued prayers all of you, along with some smiles, laughs, and fun.
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