Where to begin? As much as I would love to say this break at home has been refreshing, it has actually been rather challenging. Violet is just not comfortable. She had a few good moments and we are relishing in those! Overall she has been uncomfortable to the point that we can not put her down. Luis and I are back to rocking and walking her in shifts. She seems to be in pain, not wanting to put any weight on her body at all. So we rock her and walk her and hold her all while trying to care for the three kids and daily responsibilities. Luis is so tired he is working, doing my jobs with the big kids, and trying to help with Violet at night. I feel just terrible, I want to just jump back in and take over but Violet needs 100% of my attention most of the time. Right now my big kids are missing their Halloween Carnival at school because we just didnt have the energy to do it. Thankfully we were able to do Movie Night in the living room instead! Our sweet friends brought dinner and dessert and we enjoyed it all so much!!!! We can not even begin to thank the many friends, family, and strangers who have continued to help pull us through this difficult time. We would not be able to keep going without you! Thank you all, I am so long over due for thank you notes it is embarrassing. Know that you are in our hearts and daily prayers! Thank you!!! Our meeting with Cottage was disappointing to say the least. There are so many permits, fire code issues, and planning issues that it looks like PEDS is stuck for another year in the old ICU. From there they do not know where they will go depending on more permits and things that they are petitioning up in the state capital. They gave an example of how extensive the permits go.... to get a permit to hang a 40 flat screen TV in the new hospital takes over a year! SO imagine our requests of bathrooms and more room, it would take longer in permits than Violets treatment outline! So we are discouraged, but understanding. It would be such a rough move to take Violets care anywhere else. She has gotten to know and trust her incredible Drs, nurses, staff and to start all over would be so unfair to her. It would be so much harder to make the long drive South for all of her extensive medical needs. It is hard to imagine another two years of treatment but harder to imagine two years of basically living in the car further away from our family. Right now we are starting to experience some of the everyday issues of living with a child with cancer. We are pretty much in the hospital or the house 99% of the time. Today was a rare occasion that I took Violet out (she has been getting car sick) to pick up her meds. We have been having problems staying on top of her extensive med list. After the pharmacy had some sort of mix up (again) with her meds, Luis was only able to pick up 2 out of the 3 that needed to be filled yesterday. After a sleepless night for our whole house after Vi woke us all up over and over, I decided to try and get her out for a bit today. We went to the pharmacy to get her much needed med. She did well for a bit but when the pharmacy couldnt find the med in question and we had to wait she started to get upset. A sweet lady tried to talk to her. We got our med, and proceeded to buy a few items we needed. She lost it at the check out counter! The same sweet lady and the clerk tried to sooth her as I paid. I finally had to say that it was not personal, she just did not feel well. Then the questions started Is the sick What does she have?. When I told them what she has it was that horrible time when the person asking feels so very bad and they are so shaken up that I am reassuring them that my baby will indeed be okay. This has been hard for me to deal with as a Mother. I want to comfort people and let them know that Childhood Cancer is not as bad as it has been in years past. That many forms are so very treatable and curable. At the same time it is not always possible to spend the time doing that when Violet is so upset. There is no rule book to walk us through this. I do the best I can and hope that people understand, and also that Violet understands that the look on peoples faces are not targeted toward her, they are in shock at the word Cancer! Kids should not be sick! Cute, adorable, sweet kids should not have to deal with these reactions or worries. It has come to our attention that Childhood Cancer in general gets the least amount of funding for research. Mind boggling. Our society says that Childhood Cancer is one of the most devastating things that can happen to a child yet life still goes on. The bills continue to roll in. There are still rules that we must follow. There are still liabilities, and insurance, and in-network providers that we have no choice about. It has been eye opening to deal with. I pray and pray hard that no one reading this ever has to deal with any of these issues. It would be so easy to just give up. But we cant. We can not do what is easy or comfortable. We have to do what is best for Violet with the resources we have available. We have to get up every day for Violet and her Siblings and pull our selves together. We have to look for the small bits of joy in the world that keeps on turning. We have to try and be kind and happy and loving because what is the alternative? We pray! Lots. I find myself praying almost more for Violets friends than our own family. It is easy to read about her friends and see the direct needs. For us it takes a while to reflect on the situation and know what is best to pray for. Peace, gratitude, the little things, compassion, patients, these seem to be big on the list lately. Thank you for continuing to pray, help, love, and support our family through this life changing ordeal. We could sure use some pray and good thoughts for the up coming week. We are set to go back to Cottage on Monday morning for another Spinal and Bone Marrow (I believe, I am always getting those mixed up or wrong) most likely with more Spinal Chemo and a Cath placed for the high dose chemo she will receive through out the week. Hopefully home for the weekend and back for another round of the same. These rounds were very hard on Violet last time around. We are praying for strength and comfort as she enters this round. Thank you again for taking the time to read this VERY lengthy post. HUGE hugs and love, Gillian
Posted on: Sat, 26 Oct 2013 02:07:07 +0000
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