Wednesday I woke up to a cranky little girl. I immediately got up to comfort her, and as I stood next to her crib, I noticed that there was quite a lot of hair around her pillow and on her hospital gown. I sat her up and was sort of startled to see just how much hair was laying in a halo around where her head just was. I actually had to brush her bed to get it off and even that didn’t pick it all up. I combed her hair with my hands and it just started coming out. A lot. I immediately called a great friend of mine who cuts hair and was the one who gave Raven her first haircut to see if she could come over and take care of business. I must admit that I was actually in a sort of panic to get it done. I just had this fear of it continuing to fall out in clumps and I didn’t think I could take that. My friend said she couldn’t do it that day so I racked my brain trying to figure out what to do. I even thought about doing the deed myself but hesitated because I didn’t want the doctor or nurses to say anything so I called in Debbie who is the child life specialist here to see if she had any suggestions. She has been amazingly helpful this entire time and has been the one to put us in touch with the Give Hope Foundation and another trust fund that helped us pay for my transmission to get fixed. I knew if anyone had ideas it was Debbie. I talked to my girlfriend just to let her know that I was looking for someone to do it immediately and told her that if we couldn’t find anyone that I would need her help and she agreed to be there just in case. Debbie told me of a spa who sends employees out for free to the hospital to give haircuts and said she’d get on it right away. Then later that afternoon she came back to tell me that the manager was out of town and that the assistant manager was unaware of the free haircut policy and wanted to charge us $50. She said she’d try to remedy the situation and so I continued to just wait. Then yesterday she came by to tell me that she cleared everything up and that the only appointment available was Monday morning. She said she had scheduled it but hoped that we wouldn’t be here then to take advantage of it. I agreed with her about not wanting to be here still and told her to keep the appointment and that I would call my friend to see if she could come by sooner. It turned out to be another big hair loss day and by the end of the day I could see patches of hair gone from my baby girls head. I didn’t even have it in me to call my friend until about 9:30pm to leave her a voicemail about the situation and by that time I figured for sure it was too late and that I would have to wait until Monday. Luckily for me, I have the most amazing friend ever because she called me and agreed to come over first thing in the morning.
This morning I woke up to her phone call saying she was on her way here and by 9am she was there and ready to go. It turned out to be perfect timing because again, as I sat with Raven waiting for my friend to get here, more clumps of hair started coming out in my hands. I wasn’t sad anymore but determined to get this haircut over with. To “rip the bandaid off” so to speak. I guess what kind of put me in a funk over the whole thing the last two days was not the actual hair loss because I had already cried over that, but the fact that it was a reminder of what is going on. I know it may sound weird but it’s kind of easy to put things out of your mind when nothing is really going on. I mean for the past week the only thing we’ve really had to deal with was Raven’s stomach bug and taking antibiotics and steroids which have become second nature now so the hair loss was a slap back to reality that not only are we taking medicine, but we are in a major fight here.
After Raven had a little breakfast, it was haircut time. She sat on my lap while my friend clipped away. I thought Raven would be more traumatized by the situation and just start screaming but she took it like a champ and that saved me from tears I know. She was being so brave and I was so curious as to how she’d look without all that beautiful hair I’ve grown to love so much. When my friend was all done I just looked at Raven and smiled. She is the most beautiful little girl even without the hair. The only thing that did make me a little sad about the whole thing was that losing the hair meant losing a security blanket for her. I’ve noticed for a long time that Raven loves to twirl her hair. She does it all the time. It actually used to drive me crazy because I’d put her hair in pigtails and she’d twirl it into a mess. She even started to do it more once we got to the hospital and I wondered if that was because it was the only thing that might have felt good to her. Since we’ve been here, she’s even started to let me brush her hair without complaints or tears and let me run my fingers through it too which never used to happen before all of this, so losing the hair was kind of like losing a little comfort for her. I can tell because she’s tried to twirl it today and hasn’t had anything to twirl and so she just pats her head and looks sort of confused and sad. I hope that she won’t miss it too much.
About her progress here- the doctor took her off the ampicillin which was the antibiotic we were supposed to go on at home but couldn’t because it only lasted for an hour and we couldn’t be released with it. He says that Raven will continued to be monitored for at least 24 hours to see if taking her off will not set her back. Today was day 10 so he says that it should be enough time to have done the trick. He has her on another medication for the diarrhea and says that he might discontinue that too in the next day. If all goes well than we should be home by Sunday. He did warn us that if she does go home and spikes a fever that she will have to be re-admitted so I am praying that she will be right as rain for a long time. It will be so nice to go home and finally sleep in my own bed after two and a half weeks here. For those of you praying, say some to keep us home for Christmas and for no fevers!
Tuesday marks day 28 which is the last day of induction and that means Wednesday we will be back her for Raven to undergo another spinal tap, bone marrow biopsy, and more chemo. Again, for my faithful friends, pray for the best results possible for day 29. It would mean so much to hear that she is clear of this first step.
Raven's Journey 