She has finally fallen asleep for the night. My heart is aching. She did have some good moments today. A little glimpse of her personality shining through. It made me smile and gave me hope for a minute. Honestly, it had more to do with her being able to keep the pain meds down. You could tell when they would kick in and when they would wear off. I HATE giving her the strong pain meds that we do (we can't give tyelonal). There is such a fine line of giving the strong meds or watching her suffer. I hate them both, but have decided that she really needs these meds. She only threw up once this morning and it was about 1 hour after the meds... so I am hoping they were able to take effect. A few of the moms that have experience with mouth sores explained that their older children said that mouth sores are the most pain they have ever been in.
She is looking really thin and not too great. I know it has a lot to do with 8 days of not eating much. It is scaring me. I know the alternative... a feeding tube. I am hoping it does not get to that. I need her to be healthy though. I guess I am having a hard time because this was not something we were entirely planning on. We knew it was a side effect, but she never had problems before. Just doesn't seem right on top of everything else. I know a lot of other kids have worse problems so I feel bad even complaining. BUT the bottom line being her suffering/dealing with pain. No mother wants to see that. She keeps asking me why she has these sores and when they will go away. I don't want to coorelate them with the chemo so I just answer, "I don't know." She accepts the answer and moves on. She is SO tough. She has thrown up over 30 times in the last week and not once has she cried. She just wipes her mouth and says, "I'm done." I can tell she is trying so hard with these sores. She doesn't really cry... just whines and wants me to hold her. She will just stare into space and occasionally say a word or two. So not like my baby girl.
Tonight, she received a blessing. It was beautiful and I was emotional. She sat so still, closed her eyes and listened to every word. Words of healing, chemo and strong girl were in the blessing. When the blessing was over, I could tell she was thinking intently. She took a few dry swallows and then said, "Mom, why aren't my sores gone? The blessing said to be gone." I was shocked and wasn't sure how to respond. A tear rolled down my face as I tried to explain to my 3 year old why her sores were still there. I tried to tell her that the blessing was to help them heal quicker. I honestly wasn't even sure what to say.
She is tough. Much tougher than me. I just want her to be able to enjoy life. This beautiful weather and fun things happening... and she is stuck inside... throwing up from the pain. Praying that she heals quickly. I want my bubbly, full of personality baby girl back.
Oh tosh my heart breaks for her and you having to watch her go through all of this not being able to do anything. Especially the part where you said she just throws up, wipes her mouth and says I'm done:( She is such a strong girl. I'd be an emotional wreck...You've done such a good job being so strong and the perfect example and mom. My prayers are with you guys. Hope she gets to feeling better ASAP!
ReplyDeletePoor sweet girl! I'm so sorry, guys. This has to be just awful. I noticed in the photo below that she looks thinner than I've ever seen her. Poor thing. I've also shied away from telling Daph that the meds cause some of the more awful symptoms. I tell her that it is the leukemia that is causing it. Which is true. I hope today is a better day. And that she starts to heal ASAP!
ReplyDeleteI have been following your blog for awhile....you are a wonderful mom and doing a great job. Hang in there. As I read the part after the blessing I had to comment......I think of the faith of a child, and will be anxious to hear how and when the sores go away. I know that miracles can and do occur--allow them to happen in your life. Sending prayers and hugs
ReplyDeleteAs a stranger who is also a mother, my heart broke for you when reading this. I can feel your anguish at having to watch your sweet Taleah go through so much pain & suffering at such a young age. It definitely isn't fair, and you have every right to vent and work through your feelings. Your daughter is an inspiration of courage, faith, patience, endurance, strength, and humility... as are YOU. Praying that things will turn around soon, and that you all will have the strength to hang in there until they do. --Corie
ReplyDeleteI am praying for your baby girl! What a trooper she is! I follow another mother's blog online. Her daughter is going through the mouth sores with the chemo and she has found a remedy that works...you may want to email her and ask...Her blog address is: http://www.emilyhubbel.com/
ReplyDeleteMy son is sick right now and hasn't been able to get off the couch for 5 days and then my heart aches more for you. I have no right to complain and haven't been able to be the mom to all 3 kids that I should be. All the emotions you feel on a way smaller scale. Thank goodness for the faith of a child. I know they will heal faster now. You are my hero!
ReplyDeletePraying for your sweet little girl, you are about 6-8 weeks ahead of us on treatment, I'm so hoping the sores bypass us, I can't imagine how hard it must be. Hugs, Trish
ReplyDeleteI am so sorry! Poor Taleah!! There is nothing worse than watching your child suffer and knowing there is nothing you can do about it! You are such and amazing woman/mom Tosh! You have been so strong through all of this! I am lucky to have you in my life! Love you tons!!
ReplyDeleteMy prayers are with you all. I don't know much about the mouth soars that are caused by the chemo, I know my grandfather got them when he was going through his stuff and I wish I knew how he combated them. I know as far as eating goes, he found he liked these things in the fruit isle by the individual serving stuff that were freezer fruits. You put them into the freezer and they froze like popsicles and then you ate them. Sorry I can't remember what they are actually called. Also, have you tried DoTerra Oils? I know a canker soar is in no way a comparison to what your sweet little girl is going through, but I had one and I used the DoTerra oil called OnGuard and my soar was gone within 2 days (instead of the typical week plus it takes for them to go away). {{Hugs}} to your sweet family and like I said, I'll be sending many prayers your way.
ReplyDeleteI'm so sorry Tosha. My heart aches so much for you and your baby. I'm a mother of five. My heart aches anytime my children are sick. I can't imagine what you go through everyday. You are a very strong mother. Taleah is such an inspiration. She is very strong and will come out of this. I pray for your family every night. I will continue to pray for you and Taleah. I hope that her mouth sores go away really soon. I pray for her to feel better. With much love and many HUGS.
ReplyDeleteLove, Jenni-Ohio
Tosh,
ReplyDeleteI am so sorry this phase is so rough(if everything thus far hasn't been enough!). My heart breaks for you and your sweet baby. The feeling of helplessness is the complete WORSE. I pray for Taleah and your family daily. I'm amazed by your strength and even more so little Taleah's. Love to you all!