New to Childhood Cancer? Questions? Ask the veterans......

Newly diagnosed? Been at it awhile but have a question you can’t seem to get answered or are worried about asking? Going to clinic and don’t know what to expect? Use PAC2’s best resource; there are some very experienced parents/caregivers here. While we certainly aren’t here to dole out medical advice, we have learned a lot through our experience and want to help you through support, advice, contacts, and whatever we can do to help.…….ask away.

Out of this discussion, we will also be collecting the Frequently Asked Questions and preparing a "tip sheet" for newcomers to this world. Who knows, your question sparks this and then we do this and then........just ask please

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I am curious to know how others have handled work. My daughter was diagnosed with Ewing's Sarcoma on April 1st. I (mom) carry the health insurance for the family and have only a limited number of vacation and sick days left (9 to be exact). Once the days are gone, my time off will be unpaid during FMLA and I start paying insurance out of pocket and pay gets cut for days out. We are only on week 9 of a 29 week regimen. My daughter is admitted inpatient every two weeks for 3-5 days at a time. I spend the nights with jeer at the hospital and go to work during the day leaving her alone with e nurses. She is 17 but I feel so guilty leaving her but also know I would feel guilty if bills weren't paid or her little brother also suffered from a loss of pay. Surgery is anticipated next month followed by more chemo and radiation added. I know that there is a strong possibility that work will become impossible as the months progress. Should I feel guilty for trying to cram work in as much as possible or jab others managed to keep working as long as possible. My kids are my life but their well-being, health & financial is important to me too. When my daughter is in the hospital, I have every meL with her. Just curious what others' take on working is and if they have worked some how they have coped. I do not have the ability with my job to work from home.
Dear Christy,
We got lucky when the child in our family was in-patient. Two parents, two grandparents and myself shared shifts so that he was never alone. Sounds like you're not so lucky, which I'm so sorry for. I often did the same as you, showering at the hospital, going straight to work and going right back. It's so hard to leave them. My suggestion is that you contact the volunteer office at your hospital. I do volunteer work at our local Children's Hospital, and often get requests from parents that can't be there all the time and just want someone to keep their child company. One poor woman has to leave her ten-month-old alone for up to ten hours a day, but with the volunteers jumping at the chance, he is rarely left by himself. Speaking for myself, hanging out with patients one on one in their rooms or wherever is the best part of the job. We don't stay strangers for long, the volunteers usually becoming good friends with the kids pretty quickly. If it can't be you, then try to trust to others' kindness and understanding to help your daughter through the times you can't be there.
My daughter was 18 when diagnosed with Acute T Cell Lymphoblastic Lymphoma( 18 months ago)... She is in maintenance therapy now but had 6 hospitalizations total. Her first was at diagnosis. She had surgery for the biopsy and to insert a chest tube for a collapsed lung from the primary (chest) lymphatic tumor. (she had cancerous lymph nodes in neck, chest and abdomen.) The doctors would have admitted her to ICU for the initial workup and start of chemo anyway. That was a 3 week hospitalization. My husband and I stayed with her 24/7 for the first week... He returned to work (he is the insured) and I stayed with her until discharge. Even in ICU, we could stay 24/7. She had 5 other hospitalizations. Four were 5-7 days in length for high dose methotrexate and leucovorin rescue treatment. During the first of these, I planned to stay for 12 hours, Dad came after work for about 3 hours and my daughter would be monitored by staff for the night... Due to the large amount of IV fluids and the other side effects, she had a urinary accident at about 10PM the first night... she was very upset even thought the nurses were very kind and helped her change.... I drove over and stayed the night. But the next night, she felt more secure and the staff assigned her favorite nurses for the evening and night shift. The remaining "methotrexate" nights went smoothly without parent sleep over. That was the pattern for the next 3 inpatient stays. Claire was hospitalized last September for sepsis. I stayed when she was in ICU but she spent the majority of the 3 weeks in a regular hospital room (all are private rooms) with just staff attendance from 9 PM until I got there between 8-9 AM. She adjusted and actually felt more secure in her independence. I did not work outside the home but we have a farm that needed my monitoring/care. Our son was a college student who did the animal chores while I was at the hospital/clinic...

I have a few suggestions for her hospitalizations and her clinic time.... 1)does your company have a policy for donation of vacation days by other employees (this was done for a coworker of mine when her husband needed extensive rehab post -accident.) Don't be shy.... people at work will be glad to pitch in 1 or 2 days of time to help you now...They might develop the policy in your case if it isn't in place 2) make a schedule of all the time you cannot be with you daughter for the coming week (include clinic days) and ask for volunteer visitors : family and friends; you daughter's friends; their parents, neighbors..... Maybe some family members or other mom's can even do the overnight.... check the hospital policy... 3) Check with the volunteer group, Social Worker or the Activity Director. They may be able to arrange visitors to stay with your daughter. 4) Check with the local American Cancer Society .... are there volunteer drivers or assistants who can take your daughter to her clinic visits and stay with her during the infusion suite time. Are there any volunteers from this group that can visit her in the hospital... Are there day, evening or night "sitters" arranged by the hospital. They may be certified nursing assistants or They might not provide nursing care but assist the patient as a family member would. Ask the social worker. 6) Your daughter's school or a local church organization may help in arranging volunteer visitors or a fundraiser to help with expenses if you opt to take a leave (help with your living expenses and insurance payment.)

My daughter's friends were away at college during her 2nd to 6th hospitalizations but they called and emailed her frequently.... The hospital had a teen room with a computer and email... later they had wi fi access and she could use her own computer. Most of her close group kept contact through her cancer journey... which is usually true... Casual friends tended to stay away and this is usual... I chose not to have our family comelong distance since they lived on the east coast and we are in California.... arrangements would have been too difficult and we handled it among the 3 of us (2 parents and my son, age 21.) The calls and cards (she was surprised at the presents sent too) let her know she was in their thoughts. We had always been a self contained unit and it turned out that my daughter adjusted to being independent as her journey progressed. My daughter became very comfortable with the staff and doctors. She grew emotionally and is actually a more confident and stronger person today.


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