This has been a long month.  K’s kidneys, CSA levels and puking are still the theme.  Her kidneys aren’t responding to fluids anymore so we decided to trial her off of them.  She was doing so awesome with drinking until Sunday night when she wasn’t feeling well.  Yesterday she slept all day only waking up to puke so she didn’t really drink at all.  Apparently what I didn’t know was that one day of not drinking and puking combined with toxic drugs can really mess you up.  This morning she was really out of it and kept asking the same questions over and over so I knew something was wrong.  We got to clinic and her temp was 100, her counts came back and they had actually gone back so I thought ah she’s responding and then her kidney numbers came back.  Poor kiddo is dehydrated and her creatinine is 3.5, to give you an idea of if that is bad or not MN made us come in everyday for labs when she was 0.9-1.1….  So Miss K got a first class ticket to an inpatient room for fluids and IV antibiotics every 8 hours.  Poor thing, I feel so bad for her.  I really thought she was ok yesterday and she said she was ok so…..  They will run levels in the morning and go from there.  Please continue to pray for K.

Thanks for the prayers!

P, K, & J – www.kimbellstevenson.com

This week has just been a rough week.  BMT is such a serious journey filled with so many tears, heartbreak, smiles, celebration and pure hell.  There were four families on our section (4 sections in MN) of the BMT floor and I fell in love with all of them.  I will never ever forget them nor will they ever leave my heart.

Maddie was at the end of the hall and her mom gave me so much hope and great hugs.  Maddie had ALL and was inpatient for 93 days due to so many complications.  The day she walked out of her room with her family everyone was cheering and I couldn’t stop crying tears of joy.  A few weeks later I saw her, they had been on their boat on the lake and they got the call she needed to come in due to a positive blood culture.  Over the weeks we would see her in clinic and while there were complications they all handled it with beauty and grace.  Maddie and her mom have been on my mind so much lately and today I found out Maddie has been given two months to live.  Please please keep them in your prayers.  I still believe in miracles and that God will be there with them and his will is absolute but please pray for them.

The room next to them was Aditya, he never engrafted and last I had heard he had had his second BMT but it wasn’t looking good.  Unfortunately he doesn’t have a care page and their English wasn’t very good so I don’t know what has happened to this poor baby boy.

The next room was Sam.  Sam made it back to Iowa to sleep in his own bed for one night before he ended back in the hospital.  He has been inpatient for over a month in and out of PICU and he relapsed as well.  J&J I miss you guys so much and not a minute passes where I don’t think of you, Sam, B, and E.  They all need your prayers, Sam has been through so much with no end in sight.

Our SDS family has lost two kids in the last week.

Yesterday I was talking with M’s dad, M was on the other section and was admitted the week after Kimbell.  He asked how she was doing and we shared a laugh of how we talk about organs and complications as oh they are JUST having this problem or that problem.

Someone last night made a comment about how they are so glad that Kimbell is better now.  Kimbell isn’t better now.  She fights for her life every day, we just put a positive spin on everything because of who and how we compare our journey to others.  K isn’t in PICU, and we haven’t been given a time frame of her going back to her creator, and she doesn’t need a second BMT but she is still really sick.  She has two central lines, two catheters hanging out of her chest, she hooks herself up to infusions everyday, she’s depressed, her kidneys numbers keep going up, and she has only puked  5 times today.  We simplify everything in this world because we know how incredibly blessed we are so it is just mild kidney failure or just walking with a walker and leg braces (M)  because compared to the others we know who were with us everyday on the floor we are so blessed.  Our kids aren’t better just because they are home, they are still fighting for their lives and taking a zillion pills a day.  They handle themselves with far more grace then I ever could but they are still really sick and if anyone thinks for once second that their blessings or the fact that they could still die at the drop of a hat escapes them they are sorely wrong.

These kids, families and others going through this process need the prayers and support of everyone they know.  So here is my challenge, take the time to send a text, a card, a note of encouragement, something that simply acknowledges or supports families going through these long journey’s like ours that you might know because the journey isn’t over when you come home.  The smiles, the struggles, trials and tribulations continue and we are all struggling to keep our heads above water.  Please pray for Maddie, Aditya, Sam, Megan, Kimbell and anyone else that you may know struggling.  It is a long and lonely journey.

www.kimbellstevenson.com

Thanks for indulging me in my vent, they rarely happen but our hearts are just broken this week.

Love,

P, K, J

I’ve decided the theme of post BMT is kidneys and puking.  All things considered it’s not too bad because it could be so much worse.  For the first time the fluids aren’t making a difference in her kidney numbers which is a serious bummer.  They have now taken her off of valtrax completely, it is toxic to the kidneys, which is scary to me since it is an antiviral and well it is virus flu yuck season!  Cook’s has continued to lower her CSA which I just found out is way below the threshold set by MN so now I’m completely clueless and concerned.  K isn’t supposed to wean off of her CSA until January at the earliest.  CSA is toxic to the kidneys but protecting the donor marrow is paramount at this point in time.  I think the most bothersome thing is she doesn’t look good, John commented last night she hasn’t looked this bad in months.  She says she doesn’t feel good but can’t pinpoint where although tonight she has been coughing, puking and her temp has hit 100 for the first time in over a month so… 🙁  Like I said it could be worse so we are counting our blessings but still praying!

Yesterday was filled with good news and not good news.  The great news is that for the first time in K’s life her ANC is 1200 and she hasn’t needed GCSF in 2.5 weeks.   That is pretty exciting.  To the point I had tears in my eyes.  Most likely she will get G on Thursday but hey that will have been 3 weeks since the last infusion!  Her other counts dropped but they are still ok and it has been almost a month since her last blood transfusion!  The other good news is her CSA level was on the higher end of normal so she gets to back off of one of her CSA pills which always makes her smile.  Me too because I just love giving my child hazardous material that keeps her alive.  Talk about crazy.  The other good thing, she was put on Clinda because her Hickman site was red and sore and it seems to be working beautifully!  We increased her anti emetics and she didn’t lose weight over the weekend!!!! and she started eating again 🙂  Happy dance!!!  Praise the Lord!

The yucky news – Kimbell’s kidney numbers stink, not sure how else to put it.  Cook’s and MN are backing off as much of the nephrotoxic drugs as they can so she is down to one valtrax a day now and her CSA has gone down as well but as of now the drug changes are not enough to keep her kidneys in check.  Last Monday we saw a different BMT doc then we normally see, don’t get me wrong because I really really like her and I think she was trying to motivate K to drink more, but she told her that there was a good change K could get her line out this week.  Unfortunately even though K has increased her fluids and they can see she isn’t dehydrated by her numbers her kidneys have taken a hit and they love their extra fluids so yesterday they increased her fluids to twice a day.  K was asleep during the appointment and when she woke up I told her but I think she thought if she didn’t listen or hear me it wasn’t true.  Anyhow when I had her hook up to the second set of fluids last night she was absolutely positively crushed.  It broke my heart.  The thing is, it isn’t just about being hooked up twice a day but it means dressing changes, showers being awful, cap changes, this thing hanging out of her chest, infections, and the fact she can’t take a bath.  Ever since K was a baby the bathtub has always been her safe haven.  She loves to soak with her bubbles in a hot bath.  It also means she continues to go to clinic twice a week for the foreseeable future.  She was sooooo excited about going once a week once the line was out.  I hate seeing her sad and disappointed, especially after everything she has been through.  Please pray the drug adjustments pay off so that maybe just maybe we can try and decrease the fluids again.  If they don’t she will tied to IV fluids as long as she is on the CSA which is all goes well she will be done with at the end of March.

Thanks for the prayers 🙂  www.kimbellstevenson.com

Happy Halloween a few days late 🙂  Things have been somewhat stable with Kimbell lately.  The great news is that her counts have been stable and appear to have recovered since her August infection, Finally!  Praise The Lord.  Unfortunately her kidney numbers have almost doubled so we are having to lower some of the nephrotoxic drugs which give her an additional level of protection.  She continuous to be nauseas and have GI issues which is leading to even more weight loss.  K takes nausea meds around the clock but we had backed off on the amount of meds since she wasn’t throwing up. We are increasing them so maybe she will eat more.  She looks good but has lost over 5kg since she was discharged from her initial BMT stay.

On another positive note Kimbell was able to go trick or treating.  Of all the costumes she has she ended up wearing one of her white and gold dresses with an angel halo…  I couldn’t have been more thankful as dozens of people told her how beautiful she was.  This is such a hard road physically and emotionally and so many people have called her a boy in the last couple of months that this was a huge blessing.  In true Kimbell spirit she had more fun handing out candy to kids then she did getting candy.  This child has such a huge heart.

Thank you all for your prayers and support.

Love,

P, J and K