The days leading up to transplant
With each new day of chemo we could see Emerson slowly start to lose is "umph". He no longer wanted to stand or even sit on his own. I soaked up every second of cuddles I could. As nice as the cuddles were it was so hard to see the life draining out of him. One of the chemo drugs caused Emerson to break out in a nasty rash which we treated with benadryl. He was nauseous from time to time and all of the medications/ongoing norovirus infection have caused him to have persistent loose stool. Even though Emerson felt pretty lousy he was still in good spirits. His smile is the sweetest thing in this entire world. He barely fussed and was content watching the Bee Movie for the 500th time in a row. On our last day of chemo I received the most thoughtful gift from a dear friend. It was exactly what I needed to push through the next few days. It was filled with all of the "essentials" we would require for the next few days- the last day of chemo, our day of rest, and our "New Life" day. It was seriously the sweetest thing and I will cherish the memory forever. (Thank you, K xo)
(Mondayzzzzz)
My boys :)
Serious sweetness
New Life Day!
We had a pretty low key morning. We were all anxiously awaiting any news from the lab about the stem cells (quality/quantity) and when we would start the transfusion. We were told that the quality was extremely good but there were quite a bit of the donors RBCs that they were not able to remove. They do not screen donors for blood type and Emersons donor was not a match to him. This meant that to be safe we would have to give the stem cells in two batches to reduce the total number of RBCs in the unit. Shortly after lunch, our room filled with nurses and equipment needed for the transplant. You could feel the excitement of our family in the air. The first cells entered Emies body at 2:16 pm. It is mind blowing to think that such a small amount of cells can do such a big job, the total quantity infused was only 30 mL of stem cells! They are transfused into Emies blood stream and know exactly where to go and what to do. Those cells will start dividing and growing creating an entirely new immune system. What an extraordinary process. Emerson tolerated the transfusion well and there were no complications. We ended the day with a nice supper to celebrate what an extraordinary day it had been. Emerson now has a second birth day :) They started the second transfusion early the next morning, again, with no complications.
lazy morning watching flix
The box carrying Emies new immune system
<3
The days following
The bad: The side effects from the week of chemo slowly began showing up. Emerson has not left our arms. Some days even lifting his head up has been too much. He developed blisters on his bottom that have been a nightmare. We have a whole pharmacy worth of things we need to put on his bottom to keep it safe from infection until his cells grow enough to heal it. On day +8 he began losing his hair. It has only thinned so far and he still has a pretty good chunk on the top of his head :) He has needed two RBC transfusions and one platelet transfusion which he had an allergic reaction to.
The rash that covered his back, shoulders, and face
The good: He has only required tylenol for pain management! He has also not required any additional nutritional supplementation. We were told that 99% of children require some from either an NG tube or TPA (nutrition through his central line). I was so nervous of Emerson potentially needing these because I have no experience with them. So for him to keep eating like a champ has me singing Hallelujah. He also did not get any mouth/throat/intestinal mucositis! After transplant our dr also told us we were allowed on "pass" for hour long walks outside. It had been 19 days that Emie had not left his room. We couldn't wipe the smile off his (or my) face the whole hour!
That smile melts me
Soo HAPPY!
Over the last few days Emerson has officially "engrafted". This is incredible news! It means the cells have made his body their home and are GROWING! His white blood cells and AGC (total neutrophil count) have been in the normal range for over three days and they have stopped giving him GCSF ( a drug to stimulate his body to pump out immune cells). As great as this all sounds we are in no way out of the woods. Now we have to be extremely cautious in looking for any signs of acute graft vs host disease (GVHD). This can show up in his skin (rash), liver (bilirubin levels), and intestine (persistent diarrhea). These can show up any time in the next 100 days. Emerson is on a medication called cyclosporin which is an immune suppressant and helps prevent GVHD. It is not a very pleasant drug and makes E feel pretty lousy the entire time its infusing (2 hrs twice a day). We have been trying to get it to a "therapeutic level" in his body. This means they give an amount and test to see if the level is where they need it to be with blood tests. If its too low they increase the dose and vice versa. They overshot the amount they needed to increase Es dose a couple days ago resulting in his body having too high of a level. He has not tolerated this well at all. He has broken out into large red blotches that fade and appear in a new spots. He's been fussy and lethargic. There is also nothing we can do but make him comfortable until his body metabolizes the drug down to where it needs to be. Aside from that, Emerson is doing extremely well. They are switching most of his medications over to oral doses we can go home on. The last of these switched will hopefully be Monday with the cyclosporin as long as we can get the levels where we need them. If all goes to plan we should be HOME mid next week!!!! PLEASE GOD let us be home next week!! Once home we will be under the same isolation as pre-admission and we will need to make multiple trips a week back up to the hospital for clinic visits but at least we will be home.
With each new day we are one step closer. Closer to discharge, closer to having our fur babies home for good, closer to being able to get aunty/uncle hugs, closer to playing with friends, closer to having a working immune system.
D
D
Oh my gosh Danielle. You guys have been through so much. This post just has me in tears. He is such a strong little guy - thank god! But oh my gosh he has been through more than any little person should. I hope the next 100 days goes by smoothly and his little body keeps being so strong despite all that is being asked of it! Thank you for the update, you guys are always on my mind. Let me know if you need anything at all.
ReplyDelete