Day +102

It's been a while since we updated on Kole's journey.  Life has been all over the place and we simply lost track of the days. I always have a "feeling" that when we update there is always something negative that comes after a positive post (speaking from the past few entries) BUT this is transplant life and things UNEXPECTED happen.

We were readmitted on 2/17 after Kole woke up with yellow skin and yellowing of the whites of his eyes. He had numerous gallstones lodged in his bile duct causing his liver numbers to go through the roof and causing his skin to turn yellow. His body has moved some of the gallstones and sludge, which has helped tremendously. We finally got him in a good place with feeding and managing his pain. We had his routine bone marrow biopsy done on 2/23, we should get those results within a week or so. After 10 days inpatient we were released on 2/27.  We continue to go to clinic each week to monitor his levels for his medication, infections, and overall to make sure he doesn't need any blood products.

We went to clinic on 3/1 and were told that he is 97% donor cells! We are over the moon happy to hear that. He is on the right track to kicking cancer's ass! Of course, we asked the dreaded question of "Does this mean he is in the clear for good?", his doctor's answer was "TAKE TODAY AS A WIN" They cannot guarantee it will never come back. We knew this going into the transplant process, it would either work or his body would reject it. We will take each day as it comes. We have a LONG way to go before we can breathe easy, which I don't know if I ever will be able to since we don't know how or why Kole got this rare cancer and it's unexplained. It'll forever be present in our lives and a constant fear. 

Kole still has no immune system and will still be in a bubble from the world for a year to two. The Only places he's allowed to go inside is to the hospital. He can be outside but kept distant from people still. Our circle is small, and it breaks our hearts that our family and friends can't take part in Kole's life right now. We are lucky to be in a world where facetime and video chats are easily accessible. I am thankful that we get to share Kole with our family and friends that way.

Fast forward a month, we have managed to stay out of the hospital from being admitted back in February. We have been in and out of clinic a lot more, but we have managed to avoid being admitted which is GREAT! Kole had mild skin GVHD that was cleared up by some steroid ointment, he has been super dry and is being slathered in Aquaphor multiple times a day. He could slide down the hallway as his doctor said.  His G-tube is a constant pain in the ass, I'm grateful for what we use it for because without it Kole wouldn't be getting his meds but using it to feed is impossible. His body just does not like it. We have been able to keep his weight stable but some days when he doesn't want to eat, we wish the g-tube could be used without causing pain. We've been working diligently to get home. Kole and I have been in Dedham still as we have faced a lot of sickness in our family and trying to get our house safe for Kole. A lot of new precautions have put in place post-transplant, and I don't think they ever truly prepare you for what you need to do in order to make sure your home is safe for this new life. Videos, trainings, and all the paperwork you are given doesn't give you enough insight on how MUCH your home life and what you live in now will have to change. Your home may be safe and clean - but on transplant precautions it must be SUPER clean. It's wild...that's simply put. 

Day +100 is a milestone for transplant life and while we thought we were on the right path with only a few speedbumps we landed back on 6 West on 4/7. Kole spiked a fever of 106 on Saturday 4/6, we were rushed to UMASS by ambulance, during transport they tried to get his body temperature down by putting ice packs all over him, starting fluids and giving Tylenol. His temp came down to 104 when we arrived in Worcester. They checked his blood counts, ran infections disease panels, and swabbed him for all the things. We were eventually transferred to Boston. It was a long night/morning and finally made it up to a room at 5am Sunday. We were told yesterday that Kole has a Staph infection in his blood. It's moving fast which is why the fever came on so strong. He's on two different IV antibiotics to help keep the infection from spreading anywhere else. He will be having surgery tomorrow to have his central line removed, because the infection is one where it loves foreign objects in the body, and it has already attached itself to his central line. We are having an ECHO done on his heart to make sure it hasn't spread there yet. We are praying it hasn't gone that far.  Once the line is out, he will have two IVs placed until he can have a PICC line placed two days later. He will more than likely get a port after he gets rid of this infection. He is so weak and just not himself it's heartbreaking watching him decline again. We hope this is an easy fix with antibiotics and this will be behind us soon.

Please keep praying for Kole and our family as we continue to navigate through these trenches.

#Kolescrusade

#Tinywarrior