Now to get to Luke!  He’s been battling a bacterial infection since Friday when he felt horrible all day and then spiked a fever early evening. It was supposed to be a special night for him and I had a fun little dinner, BMT family room reserved, movie ready, and decorated. He was missing a significant night at KU so I was trying to do something to get his mind off of it. Well, the fever put him on isolation, running more blood cultures, and adding more antibiotics. Initial results didn’t come back until midnight so RAINCHECK! The good news is I got the IT guy up to fix the TV in the BMT family room! It hasn’t worked at least for 2 years. WIN! There has been quite a bit of discrepancy regarding which specific bacteria he tested positive for, and if he ever really did. He is also having a LOT of pain in his neck where his broviak goes into his jugular vein. Some think it is muscle. He has since had an ultrasound, x-rays, and shit-tons of antibiotics in case of infection. He has gone from Tylenol, to tramadol, to oxy, to morphine, to Flexeril. Still hurts pretty bad but not getting worse. I am hoping as his counts start to come up, this will dissipate. He has not had a fever since Friday, to my knowledge but has felt very run down. His HGB has gradually been dropping and dropping and Luke has held out on a transfusion. Last night it dropped to below his medical threshold and he got blood! I hope this makes him feel a lot better today! He is eating great and has gained some weight back from chemo.

Yesterday, he powered through his Calculus final-:):):):):):)  He has been worried about finishing his first semester classes and his GPA. KU has been great working with him on this. His little monocyte micro-baby cells are starting to go UP! This is the first indication his body is kickstarting again and making cells which means he is HOPEFULLY closer to coming home for a short stay. Let’s go neutrophils! His ANC has to get to 200, currently at 30 today! Better than 0 like it has been for weeks. TICKING UP and ready TO POP!

I had an initial consultation today with our BMT coordinator. We have asked 2546 people about just having someone from BMT team come give us an update for 5 days. Nada. Then yesterday our coordinator called me. Just a little criss-cross of no communication. It happens. Here is what I know…They sent 8 people to Dr Kohler (Luke’s transplant doc) with a 9/10 match (some she said are local). They sent 11, 10/10 cord blood matches. Cord blood MOST of the time is not enough to use for transplant (esp considering Luke is a larger/tall “kid”) but not out of the question at all.  We don’t have a perfect match. We want a perfect match.

Dr Kohler has not looked at the list yet. Our coordinator will refresh the possible donors on Monday to see if any new 10/10 matches happen to pop up. Please, please, order a swab kit, if you are eligible, asap. People can text the word BucketsofLuke to 61474 and request a kit be mailed to them. I am not sure if ALL the people that tested a couple weeks ago results are in the system yet or not. That is why we will keep refreshing. I hope.

They are planning on another cycle of chemo before transplant even if he is MRD negative and in remission-to put him deeper into remission and transplant will not be ready. I pushed on the speed in which this has been handled thus far and that I will be, again, gaining second and third opinions-specifically with Texas Children’s (their ONC team originally told me they would get Luke to transplant after first cycle if in remission).  We have an in depth consult with Dr Kohler and team on Dec 27th at 2 PM. If Luke is in patient, they will come to us.  If he is not, we can coordinate telemedicine and or timing of checking his hgb and platelet counts as outpatient. They estimated he will have a week-ish at home (except of course going in for lab work frequently). 
I asked about possibility of buying live marrow from a private registry…they had never received that question before but thought it was a good one because a lot of cord blood storage companies are private-like where we store Luke and Masons. That is always such a strange bill to pay for yearly, but I am so thankful we have it!

I am preparing to spend Christmas with Luke at the hospital. GG and Papa will be joining us several nights and we are ready to make it as great as we can. Mason and Lukes Dad, Ben, will be on his family ski trip for the week but Ben and Mas are planning on driving down for the day on Christmas. I am still HOPING AND PRAYING to get him home for Christmas but am totally prepared if he is not. Luke and I discussed that it is when you celebrate Christmas, it matters who you are with and not where you are. We will focus on the true meaning and the birth of the man that is cradling and guiding us all. His hospital room looks like Santa threw up in it. We love it! I also think of it like what your great great aunt Gretal’s old little house with knick knacks and chotskies stuffed into it with lights blinking, photos everywhere, complete with an upside down hanging Christmas tree. I even double sided taped some wrapped gifts to the wall. Have to maximize space!

I keep thinking about the song Love Rollercoaster. It plays in the back of my head as we navigate the gargantuan and tiny things of this ride I am on. It has a fast pace and that’s how I feel most of the time. It also makes me happy because I think I’ve danced to that song 456,703,009 times. No idea of the actual meaning of the lyrics and don’t care. I would love to get the F off this roller coaster but I am keeping my arms and legs inside at all times, but I don’t promise to stay seated. At all.

GET TESTED! People can text the word BucketsofLuke to 61474 and request a kit be mailed to you. TODAY. NOW. Its free. It is an easy mouth swab.

Buckets of Santa throw up,

Suz

PS- let me know if anyone knows of a private company that has living bone marrow donors. If not, someone needs to start that company:).