Long update!
A very long week
I haven’t update in a while, not because things haven’t been happening but compared to what our dear friends have undergone it makes our issues seem pretty minor. Kimbell has been sleeping more and more so I was happy to go to BMT clinic with her on Monday. We found out Kimbell had EBV in August which in my mind explains quite a bit. It’s funny back in June or July I had a wonderful conversation with someone at SCS about not knowing what to do with Kimbell this year. Her advice was to not be in a rush but just keep praying and listen for God’s guidance. We still weren’t sure when we got Kimbell’s one year results in and those results solidified our decision to keep her out a year. So oh wise one, I hope you are reading this and know that I did listen to you. K still wants to come speak at Chapel too! Anyhow at this visit her doctor reamed me about not sending K to school full-time after I got done telling him she is sleeping 12 hours sometimes more and truly needs the sleep and AFTER he told me that she will continue to be sick throughout the year as she catches every virus known to man because her new immune system has to be trained. Ugh seriously. Then he goes on after I asked some questions regarding our endo appointment to say she’s probably infertile. Seriously you just said that in front of my 11 year old daughter. I could have screamed. She hasn’t said anything but unfortunately due to breeding dogs there is a darn good chance she knows exactly what it means. The saving grace right now is that she doesn’t want kids but she is 11. So for all my doctor friends out there please know that what you say impacts families and please when you are talking about these types of issues remove the child or be vague or so specific they don’t have a clue what you are talking about. He also mentioned something being wrong with her marrow – when this happened she grabbed her phone and shrank to the corner of the bed and was heads down for the rest of it. As for the doc we saw on Friday, can I tell you how much we love you? You always make everything better and help us feel that we are not alone. That we always have someone fighting for our little girl and us. Thank you.
So that was Monday. On to Tuesday, K made an A on her History test. We are so proud of you!!
Wednesday – this day just stunk. Kimbell has a new doctor on her team. She now sees endocrinology and let me tell you I loved this doctor. She is kind, thorough, understanding and explained a lot. Unfortunately K has more problems than ovarian failure, apparently she is in menopause at 11, her thyroid is messed up and she has short stature. While all of these can be helped with the addition of drugs (minus the ovarian failure) those drugs also have complications. It will take 2-3 weeks to get all of the test results back at which point she will talk to Dr. Tolar and he will decide when the endocrine doctor can intervene. Seriously this was a lot and I mean a lot to take in. Kimbell has been through so much and we knew that all of this could happen but when presented with the choice of life or death you choose life. We are so incredibly blessed and nothing will change that and we know it but it is still really hard. You hope that things aren’t what they seem, that she isn’t really sleeping that many hours, that the latest bleed in no way lasted as long as it really did, that she isn’t as moody as you think or that she has so many shoes because we just keep buying bigger sizes when in reality her foot hasn’t grown in years, that her friend really isn’t that tall and then just like that it is what you thought it couldn’t be.
Yesterday Kimbell’s friend spent the night which is always a treat. Last night I wanted to go in my closet and hide so I could bawl my eyes out. Kimbell went to the SCS football game a few weeks ago and apparently met a new girl. What I didn’t know until last night is what happened. You watch the news, you read the headlines, you read about bullying but for some reason you think that you or your child is immune to it. Kimbell has always felt isolated but that was because she couldn’t physically do things not because of her appearance. Last night I found out that this 6th grade girl told Kimbell that the reason she wasn’t back at SCS is because she is a midget! Why does any child think that it is ok to say that to another child? Then at school the next week she had more choice words about Kimbell which of course at this age got back to Kimbell. We as society somehow need to teach our children that these things are not ok. That they truly hurt our children. Hurtful words don’t make the attacker bigger or better and belittling another person is not ok. My daughter fought harder than any child should ever have to fight to stay alive, to beat the odds, to defeat every statistic ever put forth, she went through organ failure, infection after infection, such toxic chemo that one was taken off the market, took hazardous material by mouth for 6 months so she wouldn’t reject her donor marrow, dealt with people calling her a boy because she was bald and just as things are settling down she gets bullied by a kid. Apparently my baby is short because the chemo seriously messed things up and you and I know as adults that she will be ok but she doesn’t. Absolutely breaks my heart.
I mentioned bleeding earlier. Kimbell has been having issues with bloody noses and coughing up blood again. Unfortunately the bloody noses have been massive bleeds to the point she gets dizzy because she loses so much blood. Our amazing ped has been running tests to see what is going on. Then there are Kimbell’s joints – she sounds like rice crispies when she walks or moves! It is crazy. We are so grateful for Dr. Tolar and that he helps us out via email, asks additional questions and we are able to communicate back and forth.
That’s about it, more than enough stuff going on! Kimbell is anxiously awaiting Halloween, she loves Halloween. Stitch is still her faithful sidekick. He is such an amazing dog. John is still working insane hours. The best news of all is that K is doing great in school, we are so thankful. We are also so thankful that her new immune system is fighting hard against all the yucky viruses that are out there because there are a lot of them!
Many prayers to all of you.
Love,
P, J and K
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Prayers and hugs for all of you! God bless… b
Prayers to all of you! You are right that she is a fighter and kids can be so mean! Ryan was small in his class too. I remember him going to High School and he was little I thought they are going to beat him up. That was how we found out about DC at age of 14. Years later he did grow to be the size of other kids. Tell K she is not ALONE!
Glad to hear the positives and so sorry about the bullying. Kids can be mean and you are right that parents need to teach them not to be. Ana dealt with quite a bit of bullying last year and it just sucks! Praying for you guys. ((HUGS))