Our little two-year-old! Happy 2nd Birthday buddy!
After port-placement surgery on Wednesday, February 1st.
Just before surgery, being silly!
Eating cupcakes!
That was a fun challenge!
Benjamin and his big sister, Maddie at Chuck-E-Cheese to celebrate!
Benjamin and his new LCH/Histio buddy, Hayden! Hayden taught Benjamin how to make silly faces for pictures, and since then Benjamin sticks his tongue out when it's time to take a picture!
We love Hayden and his family! He and Benjamin enjoyed showing off their port scars to eachother.
Wednesday was port-placement day. The surgery began an hour and twenty minutes late but went well. We were disappointed that Benjamin's new port is in a different location than the first, however. The surgeon did not think he could place in the same position as the last because of too much scar tissue. Rather than having future problems, we decided to trust him and go with the new location. His port is now located on his upper right chest instead of his lower left chest area.
Recovery took longer as well because Benjamin threw up. As a result, they kept us longer and we were not able to make it to the Oncology Clinic before they closed. At that point, chemotherapy was going to be post-poned a day.
Again, the poor little guy threw up on our way home from the hospital and we then attributed this to having the same flu virus that our four-year-old, Maile had the same day. He seemed to feel much better later after he was able to eat our yummy dinner (brought to us by some wonderful friends) waiting for us at home!
The CT scan was scheduled for the next morning and once again, Benjamin was forced to fast as per requirements for the scan. I worried because he seems to dehydrate fast. We hoped he wouldn't have to be sedated as he hasn't ever needed to be in the past. After waiting for a while, the nurse was unable to use his port for the CT. At that point, we needed to go to Oncology so they could fix his port access. Instead of fixing it, they had to re-access it, which was the most miserable experience of the entire week for Benjamin! After having the surgery the previous day, and having pain because we couldn't give him any pain meds due to the fact that he was still fasting, they had to re-access it with a new needle and no numbing cream. Thankfully, the nurse was quick and able to access the port.
Finally, we were able to return to CT to get the procedure done. Because Benjamin didn't feel well, and had been fasting for so long, he was irritable and wiggly. They chose to sedate him at that point which ended up not being quite as bad as we thought. He was barely conscious of what was going on and didn't seem to be too bothered after all. We were then sent to recovery and that is where we figured out that he had a fever!
Dr. F decided that he didn't want to make Benjamin even more miserable that day. He concluded that is was okay to post-pone the chemotherapy initiation. Instead, we did the fever work up where Benjamin received IV antibiotics and fluids. He was such a trooper! He finally perked up around 4:00 when they de-accessed his port! I think he was just so relieved to be free of that miserable thing!
From the CT scan, we learned that he actually has three or four more lesions than they thought from the x-rays- two on his right ribs, one on his left rib, three or four on his right parietal bone (skull bone on the back top of his head), and still the one on his third left toe. Thankfully, the LCH this time is limited to only his bones so far.
His treatment map is a little different that what we originally thought. He will have the Ara-C and Vincristine for four days in a row, with Prednisone for five days, every four weeks, right now. This will continue for a total of 32 weeks, which is about 7 1/2 months- not a full year like we thought, assuming all goes well!!! We pray that all will go well!
As far as symptoms go, we have been told that he may experience stomach upset and hair thinning (probably not hair loss). Also, leg and jaw pain are common in kids this age with this dose. One symptom we are not excited about is the fevers. He seemed to have multiple fevers the last time and now it seems even more likely with the Ara-C.
All in all, we can do this! Wednesday should be the day that he will begin these treatments in the clinic at Primary Children's. Home health will come for the subsequent days of chemo, unless his blood counts are down or he is sick.
Thanks everyone for your concern! I don't feel like there are words enough in the English language to say thank you appropriately! I pray that God blesses you all for your compassionate service and caring on our behalf! We couldn't survive without all of your uplifting and encouraging words! The spirit of God fills our hearts with warmth and love when we think of you and your wonderful friendship to us! We will get through this, we know we will, but only with the strength of the Lord!
