July 3, 2008
"God is Great, a true miracle arose over the night hours, and we returned this morning to find our boy able to hold his head up, use his arms and hands, and is even able to walk, talk, and stand. The staff here is truly amazed. They thought it would be at least a day or two, sometimes even three, they said, for this to happen. Looks like he responded well to the meth blue, and God truly placed His hand upon him as he slept. I am just so so so thankful and grateful, my boy is starting to look like his old self again. Right now he is getting a blood transfusion due to low red blood cell count. We are still waiting for the doctors to collaborate and make a decision regarding the next step. When I find out I will surely update. Thanks for all the diligent prayers, they truly are being heard and answered. God bless this beautiful day."
July 4, 2008
"There may be a slight lull in updates over the next week, because today we are going home! After cancelling the chemo, we are just going to pick up on the next chemo cycle, which is July 14th. In the meantime,we have learned how to give Kole his injections at home. We are going to have a nurse stopping by our house several times a week to make sure we are okay and to get blood counts and to help us out. Hopefully he won't be too neutropenic or anemic, or catch a fever, or we may end up back here before the 14th. At least for now, we get to go to our new apartment. We just cleaned out our room here at the hospital, looks like we've been here a month! Almost......Now we have to go over to Ronald McDonald House and clean our room out. We have so much stuff to take home, we kept accumulating and my husband would bring more things when he would go home. Anyways, I don't have the internet at home, but my best friend may have a laptop for me, so hopefully I can still update in the meantime. If anyone is interested in supporting us in our endeavor to organize our apartment, just give me a ring. Also, we are going to be buying stock in disinfecting wipes and hand sanitizer, if anyone is interested in donating in that respect. Outlooks for Hair in Etters is having a cut-a-thon on July 27th, so spread the word and let everyone who needs a fresh cut know the proceeds that day (from 11-3, I think) go to Kolebear! Thank you all for everything that you have blessed us with, we feel so lucky to be surrounded with such love and support. Thank God for friends and family, and even for strangers who have been touched by our story, and we hope we now will remain close friends. God bless...and off to our house!
July 14, 2008
"What a beautiful hectic world we went home to on the fourth of July! We did have a wonderful ten days and we got a lot accomplished. We are officially moved-in and have most everything unpacked. A lot of visitors came to see us at our new digs, and I want to extend a special thank-you to Anthony and Corinne who came all the way from San Diego. Kole really loves his bubble machine and his story reader, and we appreciate all the food and conversation. I hope you had a nice time while you were here, and I hope we can all meet up again when life isn't so overwhelming, and we can truly enjoy each other's company a little more. I know I wasn't feeling "myself" all week and perhaps kept to myself more than I would have liked to. I feel your stay here didn't go as smoothly as I'd have liked it to, and I hope one day we can do it again. Maybe next time we can actually leave the house more, and maybe even meet up in California!
After our discharge on the 4th, the weekend wasn't very eventful, although we did get to take Kole to see some Fireworks! It was his first fireworks display, and he loved it! Our home nurse came by the apartment and we changed Kole's broviac dressing, boy was that a show. I have since explained to the new neighbors what all the habitual screaming is about, and they understand. I'm not sure all the fuss was worth it, because we had to change it again ourselves. Another ordeal, but at least it stayed on the second time. He also is not very fond of his neupogen injections. Kole's appetite is awesome and he is gaining weight back. He slept really well all week, but not in his crib. He now has a crib phobia, due to the prison-like cribs here at the hospital, so we brought in the car-bed that William gave us. He likes that a bit more, but is still warming up to the idea of sleeping in it. I'm not convinced he won't just roll off of it in the middle of the night, either, so he is still sleeping with us at this point. It takes some getting used to, considering he hasn't slept in bed with us more than a night or two since he's been born, but I do enjoy snuggling him and hearing him breathe next to me. Last Monday he had painful urination, and we ended up back at Hershey on Wednesday. The pain didn't cease until Thursday, medical mystery. All tests were negative. The rest of the week flew by too fast, and here we are, yet again, on the seventh floor of HMC for Kole's next round of chemo. I did find out today that they will be trying the ifosfamide again at his next round, but will give him the methalyne blue before, during, and after treatment to make sure he doesn't have the reaction again. That scares me a bit, but I also want him to get the proper treatment, so, it's like a balancing act. At this time, we have been here all day just getting tests and waiting and tests and waiting waiting waiting. Kole is getting loaded full of fluids right now and chemo should start momentarily. We may be out of here Wednesday night or Thursday morning, hopefully. Looking forward to updating this week, and want to let all readers following our story know that we will be getting the internet at home FINALLY so there shouldn't be any more big lapses in updates. Will update soon, assuming there's news to share! Thanks so much to everyone who's donated gas and grocery giftcards, they are truly priceless to us right now. Thanks to all of you involved in the fundraisers and donations. I thank God we have a such a strong love circle around us, Kole couldn't do it without everyone. I am floored every day by another card and another donation and another prayer that reaches us. God bless. "
Still not getting the drawing time in as I would like, worked more on the basket today - trying to get some sort of foundation down before I start shading that area. Holiday exhaustion is finally setting in. This year seems to be filled with sadness for many of our friends and family that have lost loved ones, some are trying to celebrate the holidays without them for the first time. No matter how much time has passed it never really seems to get easier. I've seen many good reminders floating around on Facebook this past week and this one is probably my favorite.
Found on Dr. Joanne Cacciatore Facebook page
Some tips on how to handle the holidays with grief, first published on my blog several years ago:
So what do we do as mourners when others, all around us, are celebrating? In my nearly two decades of work- ing with and researching the traumatically bereaved I found some things which may help connect us deeply with self, other, and the natural world during what can be a very overwhelming time of year:
1. Sharing your feelings openly and honestly with others directly may help them to understand. Sometimes, the process of discussing the loved one who died before the gathering begins can relieve the tension others may feel wondering, “Should I talk about this or not?”
2. Rituals are often very helpful, especially new ones. A few ideas, for example, include lighting a candle and having a moment of silence at the beginning of the holiday meal, asking family members to make a donation to a specific charity in his/her name, setting an empty place at the table for him/her and asking each person to tell their favorite memory, volunteering as a family in his/ her memory, buying a gift for a child the same age and donating it, and a craft-making project where family and friends make an ornament in his/her memory. This not only gives others permission to share their feelings but also brings people together by enacting grief.
3. Connection with a support group in your area can be very helpful. Empirical research suggests that social support is one of the most important variables in helping grievers cope. There are many grief groups that meet in person and online. Even social media can be used to help connect grievers to one another.
4. Get out into nature if weather permits. Take a walk, hike, or just sit outside. If that’s not possible, then bring nature inside. Create an indoor window garden or a Zen sand garden. When possible, expose yourself to natural sunlight at least a few minutes each day.
5. Move your body. Exercise, even just walking, can help increase positive emotional states.
6. Practice intentional solitude using contemplative prayer, silent time, or meditation. Take a few minutes every morning and evening to breathe slowly and deeply, eyes lightly closed. Focus on the stillness if you can. Keep this practice going.
7. Change your routine. From the small things, like changing the music you play when putting up the tree, changing the meal you eat for a holiday, or leaving town for a vacation at the holidays, novelty can help us cope at difficult times.
8. If you are spending time with others during the holidays, tell them in advance of your fragility. Let them know that you may leave early (it’s nothing personal toward them), ask them if there is a quiet spot in the house where you can go to be alone if you need it, and tell them the ways in which you’d like them to discuss- or not to discuss- your feelings openly with others.
9. Give others permission to talk about your precious loved one who died. Tell them what you need. Sometimes, fear gets in the way of others approaching the bereaved. You can write a letter delineating what you would like. For example,
“Dear friends, At this time of year, we are struggling without our daughter, Jane, in our home. We know it is frightening but we’d like to ask you to talk about her with us and to ask how we are really doing. We’d like you to remember her in your prayers, and then tell us when you do. We’d like you to consider a donation to X charity in her name. Please send us emails rather than calling us. We find phone calls to be overwhelming right now. We’d appreciate help with meals during the week of Christmas. If you are able to leave a meal at the door, we’d appreciate it. Our friend, Mary, will be coordinating that for us. Please contact her at XXX-XXXX. Finally, we love to receive cards so please keep them coming. We love hearing your favorite memories of Jane. Thank you. We are grateful for your support, and will need it for many years to come.”
10. Finally, give yourself permission to take care of you and your family first. It is okay to turn down invitations to events, to cut back on holiday celebrations and décor, and to ask for help with child family members who may also be grieving. Eat nourishing food, drink water, get enough rest when you can, and watch alcohol/drug consumption. Stress, naturally, distracts us from self-care, so you’ll need to be more vigilant during this time of year.
There is no question that, for many, grief and the sense of isolation and loneliness amplifies during holidays.
These 10 simple strategies may help us remain more self-aware, self-compassionate, and feeling more connected to those around us who love us, to our precious one who died, and to a deeper and wounded part of our self. Together, and connected, we can get through these dark days.
-Dr. Joanne Cacciatore (c) 2009
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