Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
