Hello All,

Well I did not intend to just drop off for 3 months! Sorry about that. So much to update on.

During my last post, Kohen was in the hospital preparing for a bone marrow transplant. Kohen received his bone marrow transplant on January 5th. It was a surprisingly anti-climactic event. The bone marrow was harvested from the donor somewhere in Europe and flown to Cincinnati. They weren't sure if he would get one or two injections over two days depending on how much they were able to harvest. But the donor was able to give enough in the first harvest that only one injection was required. The bone marrow harvesting process is much more invasive for the donor than for the recipient.  The donor has a minor surgical procedure where the marrow is removed from their hip with a needle...much less drama than what's shown on Grey's Anatomy.  Once we got the bone marrow, it was injected through Kohen's central line over a minute. Kohen actually slept through the transplant. He was pre-treated with Benadryl so he dozed through the whole process. 

Over the next couple weeks we just watched and waited in the hospital to see if Kohen's body accepted the transplant and to monitor for side effects from the chemo and transplant. We had been warned that kids can get really sick the week after the transplant because their body is doing a lot of work to accept that transplant and also they chemo is still wrecking havoc on their body. Most kids require lots of pain medicine, stop eating and require IV nutrition, called TPN. Chemo is really hard on your stomach and mouth so people usually lose their appetite and can get sores from your mouth all the way down your GI tract. We kept waiting and waiting for Kohen to start feeling sick but he actually only had two days where he needed pain medicine and stopped eating. And he never had to get TPN. My mother made home cooked meals for Kohen every day he was in the hospital. We also had Door Dash gift cards to order out for a treat.  When he wasn't feeling well, my mom made smoothies. All of these things really made a huge difference keeping Kohen healthy while we were in the hospital. 

For the next couple weeks in the hospital, we were watching his labs like a hawk to see if his blood counts would improve.  It felt like nothing was happening and then he started getting sick, and then his hair fell out. But all of a sudden, his numbers shot up and he felt better. He was doing so well that he was able to go home on January 23rd, only 2 weeks after the transplant. Most kids are in the hospital for 8 weeks, some up to 100 days. When he left he got to ring the bell and the whole bone marrow transplant team sang to him and celebrated his success. It was one of the most touching moments of my life. 

Since we have been home, we still go to Children's every week to check labs and check in with his team. He got one infusion to boost his white blood cells a couple weeks after his transplant. But other than that, he has not needed any more blood transfusions or platelets. Since he was no longer dependent on transfusions he was about to get his central line out at the beginning of March. 

We had a small set back when both Taylor and Kohen got the flu. But Kohen did really well, Thanks Tamiflu!!! Kohen was actually less sick than his sister who has an immune system and go the flu shot! 

So now we just wait til post transplant day 100. Since Kohen got the transplant we have been living in a buddle. Kohen cannot go into public at all except for his appointments at Cincinnati Children's Hospital every week. He has been cleared to see one friend, his awesome best buddy Cole. And he was able to visit with his Uncle Stayc. But other than that, he has stayed at home doing online school and playing a ridiculous amount of video games and VR. We are glad he can stay connected with his friends through video games, but I'm just waiting for him to sprout an antennae. Kohen hates online school so much that he's actually looking forward to going back to public school next year. 

Today, Kohen and I are at his appointment at Children's getting what is possibly his last infusion, a monthly injection that prevents pneumonia. After today, all his medications should be oral. And in 3 weeks, on Day 100,  they will be checking the growth of his immune system. If he is healthy enough, he may be able to resume some activities and eat some foods he has had to avoid due to injection risk. He has been begging for sushi for months! 

Ok. I think I'm caught up. I will try to do a better job of posting regularly. But things have really slowed down so we're just trying to stay healthy and enjoy life. 

McKenzie Mason