Grow Cells GROW! (Day -7 to Day +15)

I am still trying to process the fact that we are 15 DAYS POST transplant. What a journey it has been so far..

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

E's last dose of chemo!

Our special gift

Exactly what we needed!

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

All "dressed" up for his big day :)

"No more photos mom"-E

The box carrying Emies new immune system

New life entering his body

<3

The perfect end to our day

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

Shedding baby hairs everywhere

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!

Looking for les petits oiseaux

On our first walk to the duck pond

Pure bliss

This wittle face!

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.

REUNITED and it feels sooo good! - Our puppies were able to come home for a short bit while Emie was admitted to the hospital. We walked them up to the duck pond so Emie could see them. He was SO excited :)

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

Day -9 to Day -6

The time finally came to say goodbye to our friends on Unit 2. We had our last day with them on Tuesday. We had to go in for his routine check as well as dressing change, blood work, IVIG, and we ended up TPAing his lines again. It was a very long day..

Wednesday Day -9

The day we have been waiting for, praying for, stressing over, and dreading..

We didnt have to show up to Unit 1 until 8pm so we made the most of our last day of freedom. In the morning we took Emerson for a quick hike in the Paskapoo Slopes near our home. We came home for lunch and a nap. Then we took Emerson to the park to enjoy the slides and tire swing. We loaded our bags into the car and made the trip to our new "home". We were greeted on Unit 1 by his nurse who did a quick assessment. Then we were left on our own for a while to unpack and get E settled in. He made his way to the door and won over the hearts of all the nurses on the Unit with his contagious smile. Such a little heartbreaker already. Throughout the night they gave him another dose of IV antibiotics and an antiemetic drug to prepare him for the next day of chemo. Emerson slept awful the first night. I think he was unsure of his surroundings and kept thinking he had visitors coming in to play.

Thursday Day -8

Emerson woke up at his usual time smiling and ready to start the day. He was very good natured and active. It is extremely hard to keep him occupied and happy in our room. He was given his first dose of chemotherapy around 2pm. The drug that he received was a subcutaneous injection (much like a vaccine poke). He's now also on a new anti fungal through his central line, a drug to prevent liver damage, and an antiemetic drug. He tolerated the first dose of chemo well. He went down for a nap shortly after and woke up in a decent mood. We played for a bit and then had supper. He was extremely hard to get down to sleep at bedtime and partied until 10pm. I didn't realize how hard it was going to be to see him get the chemo for the first time. The nurse came in wearing a crinkly blue gown to protect herself and told us from now on we have to protect ourselves too when changing his diaper. It blows my mind that we can be injecting something so toxic and vile into my poor little baby.. Throughout the day I noticed many other nurses in the blue gowns going into other rooms and my heart weighed heavy. The thought that every little babe in this unit is as sick or sicker then my little guy is unbearable. I am overwhelmed with sadness thinking about all the other families going through this. I had a talk with another momma who's little one also has SCID and has already undergone chemo. She told me I have to stop thinking of it it in such a negative way. She said, its not "poison" its a "life saving regime". It helped a lot to hear that and Im trying to think of it more positively, but its really really hard.

Emerson has also developed horrible diarrhea. Stool cultures have been sent to rule out a new source of infection. The most likely cause is one of his new medications (3 of them can cause diarrhea). We've been going through 8 sleepers throughout the day.. poor little buddy.

Friday Day -7

Emerson was his cheerful self when he woke up. He was pretty happy throughout the day but we've noticed he's started to be fairly moody from some of the medications he's on. He goes from super happy to full out throw himself on the ground tantrum in the blink of an eye. He had his second dose of the same chemo drug around the same time. He napped after and woke up in a bad mood. I could tell something was wrong but couldn't find what he wanted. He started to wail as if he was in pain. I was frantically trying to find out what was wrong and asking the nurse if there was anything we could give him. While she was seeing if he could have another dose of tylenol he finally gave in and started taking his bottle.. I still don't know if he was just hungry (Id tried to give him his bottle prior to him finally taking it) or if he was in pain and decided to sooth himself with his bottle.. I broke down. It was the absolute worse feeling thinking he was in pain (that we caused) and we couldn't do anything about it. I cannot wait for this to be over.. the sad part is we haven't even started the "hard" drugs.

We got Emerson settled and he seemed to be in better spirits after his bottle. He was still extremely moody but at least he wasn't crying. As I was sneaking out of the unit the code bell rang. Swarms of staff flooded into the room and I could hear them shouting for the emergency equipment.. Again I broke.. That poor family.. thats poor baby. No one should have to go through this.

Emerson received his first dose of Ativan (to prevent seizures that another medication we're giving him can cause) at 8pm. In 99% of kids it relaxes them and makes them sleepy. Well, not for Emerson. He was wired- bouncing off the wall wired. He stayed up until almost 11pm. I hope it was a one time thing!

Saturday Day -6

Emerson woke up in a great mood and had a bit of breakfast with JP. They began giving him more fluids and have talked to us about maybe starting a stool replacement because he's been having so much diarrhea. Today the plan is to put in his foley catheter (protects his bum from the nasty chemo drugs) and to start the worst of the chemo drugs later in the evening. I hope he tolerates it well and if not I hope we can better manage his pain.

Please pray for my little guy as he goes through this great battle. Thank you to everyone for the words of encouragement, they are greatly appreciated.

xo, D