MUST cheer on the Jayhawks today as they play Arkansas in the Liberty Bowl! Luke is the #KUfightcancer fan for the Liberty Bowl! Brian Hanni, voice of the Kansas Jawhawks will be announcing my sweet Luke! Besides that being pretty dang cool, let’s GO KU FOOTBALL!

We had a wonderful Christmas at home! We missed our Mason like crazy and difficult to not be with him for the first Christmas in 16 years. But, it is what it is. He did not end up coming down from the mountains for Christmas day because several of Ben’s family were sick. I had anticipated this happening. Luke was pretty sad and it was another disappointment to add to a very long list. SO FRUSTRATING as his Mom to not be able to control that. But, it is what it is. We will celebrate another time and will make it just as special! We have been EATING and EATING! Playing lots of games! EATING some more. Lots of laughter and smiles. I’ve done pretty well with administering his antibiotics through his broviac, although he has mentioned a few times that I am slow. I’m working on that! It’s a process. Easy to do-just timely. Antibiotic has to come out of refrigerator an hour before administering. Wait. Then clean and flush one of his lumens, then hook up antibiotic to run for an hour. Then unhook, clean, flush with saline, flush with heparin, clean again, add new sterile cap. This process is done 3 times in 24 hours. I have lots of alarms set on my phone. Motorcycle alarm to get out antibiotic, Austin Powers alarm to prep and start antibiotic, and Road Runner BEEP BEEP alarm when antibiotic is finished. I’m pretty stealth I think when I have to do it with a flashlight while Luke is asleep. He automatically rolls over, pulls up his shirt and untapes his lumens, all while his eyes are closed. Then when I am done he says, “thank you, love you,” and rolls back over. Every. Time. I kiss him on his forehead and pull his covers up. YES- he is 19 years old but I do ALL I CAN TO LOVE ON HIM! I think if I were him in a phoggy sleep I would roll over and try to hide.

Yesterday we met Dr. Alkhateeb via telemedicine, a bone marrow transplant doctor at Mayo in Rochester. He was SO incredibly smart and kind and patient and answered all our questions. We found out how Mayo does transplants, discussed any trials or alternate ways of going about this. I said this before, as his Mama Bear, I have to exhaust any and all resources and possibilities to ENSURE Luke is getting the absolute BEST of the BEST. And like he did our last go around with this shit, he is getting the BEST OF THE BEST. Our family at Colorado Childrens or is it Childrens Colorado (hmmmm) is the BEST OF THE BEST. Dr. Alkhateeb said that the best place to do this, is where we all have the best support. And that is Colorado. We feel so fortunate to live so close to THE BEST! When we get to the other side of this and Luke is able to continue his life in Lawrence, we will fly him back for his checkups, have a local transplant doc just in case of emergencies, blah blah blah. I’m jumping the gun on planning for that!

After our consult with Mayo, we headed to Children’s CO to check blood counts, meet with Dr. Winters, and ultimately have our BMT consult with Dr. Kohler. Absolutely love Dr. Kohler (and he married a Kansas Jayhawk).  He speaks mindfully with 100% transparency. He was patient with our 100000 questions (Ben zipped quickly down from mountains to be there, myself, Luke, Morgan, and GG were in attendance. Uncle Matt was on the phone listening. Papa wanted to be in attendance but could not be.) We feel very very ready, comfortable, and immensely confident to continue this journey with Dr. Kohler and our entire hospital family-minus the two nurses I have “fired.” One got fired right after discharge as he did not clamp one of Lukes lumens after his last transfusion and our medical supplies had not been delivered so we could not flush the blood out and add heparin, blah, blah, blah. This put Luke at risk of one of his lumens (lines from his broviak to his heart), which would then cause him to have to go to OR. I digress.

Donor possibilities: We are awaiting Masons genetic testing. Luke has a gene he got from his Dad that is linked to leukemia. This gene makes several things tricky for treatment, transplant drugs, etc. We are PRAYING Mason doesn’t have this genetic predisposition (CSF3R). He is THE number one choice for donor by far if he is negative. If he has it, he is off the table as a possible donor. If he comes back positive, number two possibility is me! My marrow would give Luke much wisdom and smartassiness! A close third possibiity is a 9/10 match somewhere. We have not been able to identify a 10/10 living donor. There is one perfect frozen cord blood match in Australia but cord blood is off the table bc with a cord you have to use the GCSF bone marrow stimulant that Luke can’t use with his CSF3R gene. I told Luke he would have a cool Aussie accent though! If you don’t know me, I am joking. (Dr Kohler will be exhausting any protocols anywhere in the country that has ever used a cord without using GCFK). Once we get to a non-related donor that is not a 10/10 match, Lukes chances of GVHD go up significantly. GVHD is no bueno. CONTINUE to get tested ASAP! We will continue to search for a 10/10 donor but need to find one very soon.

We learned all about the transplant process, the chemo, the prep work- he will endure. Full body CT’s, heart tests, liver tests, kidney tests, viral load tests, antibodies, and on and on and on the week before. “work up week” We learned about the side effects- many of which Luke has already endured and all the possibilities of new ones with a transplant. We learned more about mucositis, nausea, fevers, NG tubes, fungal and bacteria infections, HPV, EBV, chicken pox (say what?), engraftment, t-cells, TMS, VOD, IPS, immunosuppressants, steroids, bilirubin, and acute and chronic GVHD. We learned to NOT google any of that. No one should. We will get our information from Lukes trained, extremely inteligent and experienced team. I will continue my education and reading of actual legit published clinical papers and hospital protocols around the world. I will not google.

Friday we go in for a lumbar puncture and bone marrow biopsy. Luke is asleep during these procedures but they are done as an out-patient. Those are sent to Seattle to the mac daddy of leukemia testing labs and we wait for those results (MRD- minimal residual testing) to see if this chemo is working or if they need to change some things up. As soon as we get those results, we will head back in-patient for another doozie cycle of chemo. After this cycle, we head to transplant. Then we win. That’s it. No other way.

We continue to be surrounded with the most incredible support and love. A never ending well of prayers. KEEP ‘EM COMIN! I am so deeply, deeply, grateful for all of you. We could not get through this without all of you. We have many marathons in front of us but know we will be carried over the victorious finish line!

A “W” bucket for KU today!!!!

Suz