BUSY little bee 🐝

We have been extremely BUSY since my last blog post.. (The best kind of busy!) Our little boy is so active! He is constantly on the move getting into everything he can. He has started demanding that we take him over to the hand sanitizer, he taps the top as if he's getting some out and then rubs his hands together :) Not only does he keep his hands clean but he has started grabbing wipes and will go around the house wiping all surfaces and toys that he comes in contact with (including moms face..). It is so crazy the little things that they pick up through watching us day to day.

               

Since my last post we had been visiting Unit 2 twice a week for a head to toe check as well as routine blood work. His RBCs had continued to remain stable so we kept weaning his prednisone. On Monday his RBC's had dropped from 120 to 99 after weaning the prednisone from 2mg to 1mg. So back up on the prednisone he went. We were hoping to have been weaned completely off this week but it is a sensitive balance. His B cells need some boss T cells to show them whats up! Soon enough.. He received his IV antibiotics as well as his IVIG during a couple unit visits making those loong days. On top of our Unit visits we have had multiple appointments in preparation for Emerson's transplant. We have seen;

+The Ophthalmologist (eye Dr.) - they did a quick vision test that showed he had normal vision. 

+The Audiologist ( ear Dr.)- his hearing and ear canal's were normal. 

+The Dentist- teeth were beautiful

+He had a Gastrointestinal consult because his liver enzymes were slowly creeping up we think due to the fluconazole (anti fungal medicine to prevent thrush) which was stopped. They couldn't find any other source that could be causing his increased liver enzymes. Blood work today showed that they are now trending down supporting the idea that the Fluconazole was the cause.

+He had an Infectious Disease consult- they checked him over and will be in charge of the preventative medications Emerson is on to ensure he doesn't contract anything pre or post transplant. 

+Surgical consult- they looked at the small hernia that he has. We think its from him vomiting 36+ days.. They weren't overly concerned with it and think if anything that they will repair it before he starts school if it is still visible. 

+A bone age scan- an X-ray of his hand/wrist. The results came back normal :)

+An echo/ECG- a scan of his heart that was normal.

+An abdominal ultrasound with doppler of his hepatic vessels- these also were normal.

+A CT scan of his head, chest, abdomen, and pelvis- all normal.

+GFR- this tests for his kidney function. They inject a dye into his central line and do scans of his kidney filtering the dye. NORMAL :)

He's a popular little guy around the hospital. 

We have had our meeting with Emerson's BMT team. It was exactly what we expected. That being said it did not make it any easier. The Doctor and Nurses were all very kind and did an amazing job of explaining the process and the specific protocol they use for the transplant. They went over first why they would do a transplant and in Emerson's case they told us it is the only way to save his life. They then went over the conditioning regime.. aka chemotherapy, the treatment from hell.. I hate everything there is about chemo except for the fact that it is the only way to ensure E has a successful transplant.. They went through the drugs and then began going through the side effects. We were prepared for most as we had done some research of our own prior to the apt. The couple that really caught me off guard were the long term side effects from the therapy.. He will have an increased risk of cancer later in life. He will be sterile (never able to naturally conceive his own children). I broke into tears when our doctor casually threw that out. I knew there was a chance of this but our Oncologist told us that it was close to 100%. I know this is not the end of the world but I also know how happy having Emerson has made JP and myself. He was the greatest gift we have ever been granted. I also felt extreme guilt that I am making this decision for him and he has no say in what is going to happen and it will impact him for the rest of his life. But we have no other choice..

We had been given hope that we would be admitted to begin conditioning on July 20th. After weeks of waiting we found out that this date did not work for the donor and they had given them a couple other dates to chose from. On the 17th we were told that we will be moving forward and the new date will be July 29th. We will go in that evening to get settled in to our new "home" on Unit 1. The next morning we will begin the week long conditioning in preparation for Emerson's transplant on August 7th. I am so so happy that we finally have a date and can begin moving forward on our road to recovery. 

I think God had a special plan for us on the 20th. Instead of being admitted, he wanted to show us just how far Emerson has come and how strong he is getting. E took his first steps (8 total) all by himself :) I cannot begin to express the joy this brought me. I am soo proud of my little warrior and cannot wait to see how much we can get him moving before the 29th! 

Last week I met with Child Life services and started Emerson in the Beads of Courage Program. We sat down for a long while and tried to remember every detail of the events that occurred since he got sick in April. He is given a glass bead for every event including ER visits/stays in hospital/ isolation/pokes/IVs/blood draws and a million other things. They have a bead for just about everything! The rope of beads is a reminder of our journey and all of the obstacles we have overcome. It helps me remember the good and the bad days and reminds me just how far we've already come. I am so thankful for programs like this and the support the staff at the hospital has given us. One day when Emerson is old enough to understand we will go through each bead and I can explain his journey and tell him how courageous and amazing he is, not that I need a necklace for that, but it is a nice physical symbol :) 

               

Emerson had begun having diarrhea last week. My heart sunk.. My mind was racing through the past events of that week trying to think of what I could have brought into the house or what we did wrong. Had I not washed my hands thoroughly enough? Was it during one of our trips to the hospital? Stool samples were sent but we still do not know what is causing it. He has no other signs of infection- no fevers, runny nose, cough, etc. They think it could be one of the viruses he contracted in April (norovirus) multiplying again causing symptoms. Dr Wright assured me that many children go into transplant with GI bugs and do just fine. This scare reinforced the urgency of the transplant. I cannot wait for the day that we can stop worrying over every little thing that for most kids would be perfectly normal. 

(We looked CRAZY cavi wiping all of the toys at the park!)

The last three days Emerson has had only one stool that was solid in comparison to earlier. After our appointment yesterday Emerson had a nap and woke up in a weird mood. I could tell something was not right. About 45 min after finishing his bottle he threw up everything.. He looked pale and felt a bit clammy. I had a bad feeling so we made the decision to bring him back in to the hospital. As soon as we got there Emerson put on a show for the doctors and nurses, smiling like a fool and chatting away. They checked him over and couldn't find any cause for the vomiting. They did a chest x ray that showed nothing and wanted to do multiple other tests and start IV antibiotics. I expressed my concern that they were not looking at Emerson or how he was presenting but just following a list of everything they could do if he came in ill. (Dr Wright is on vacation so had made a list of possible treatments). The resident decided to hold back on the other tests and consult with the Paediatrician on that evening. She was finally able to review Emerson's chart and assess him at 22:30. She made the decision to just watch him overnight and not start IV antibiotics. He woke up twice throughout the night for bottles but slept well. In the morning he was back to himself and had no other vomiting episodes. We have still yet to determine the cause. We changed his central line dressing and were able to go spend the rest of the day at home.

On top of his GI symptoms the site his central line dressing covers has become very inflamed. His skin broke out in tiny raised red bumps that were very itchy. The Paediatrician as well as his Oncologist came and assessed the site. They made the decision to treat the rash with a hydrocortisone/nystatin cream just incase it was fungal. We also had to switch from an occlusive dressing to just a 4x4 gauze with tape around the border. It has to be changed twice a day and we have to be very careful of him tugging or it getting pulled out (which is very difficult with an active 1 year old..). Already after 24 hrs the site looks WAY better. We go in again tomorrow to have the site assessed and potentially go down to one dressing change a day. So much for my quiet week home before we have to go in.. lol

Throughout all of this I have been so thankful for such an easy going, happy little boy. He amazes me every single day at his patience with all of the people that come in to poke and prod at him. I want to thank everyone for their continued support and prayers. They mean the world to us!!

xo, D