The Gong has rung!

Morning everyone, Today is going to be another long and big day but I thought I would try to get this out before it started.    

Yesterday was a looong day we arrived at the hospital at 8 am and did not leave until just before 6 pm.  

Kaleb had a rough day. When we arrived they tried to put in an IV and do blood work....it failed.  It was the worse needle he has ever experienced with no gain as they decided they would have to try again later.  

We were given directions to his Echocardiogram/Echo (ultrasound of his heart) and off we went in search of it.  they gave us the back door route so we got lost at one point and also got to see the kitchen area of the hospital along the way.  Once we arrived Kaleb went into his appointment and we were able to watch his heart on a large screen tv.  It was crazy to think that the last time I saw his heart beat he wasn't even born yet and yes it was a lot bigger this time.  After his Echo he had an Electrocardiogram (ECG) before we headed back to the PMDU.

We met Ollie the "clown" (not really a clown but someone who likes to joke around). As we were talking with him we found out that we both knew Mr. Porter! Ollie was shocked that Kaleb and some of his friends were able to play Chameleon in elementary school and said the Jazz band he was in wouldn't even touch that piece due to the challenges that piece throws at you.  

After getting set up in a room in the PMDU the nurse decided she wanted to try getting the IV and blood work done.  Sadly the numbing cream did not work again  (thankfully Kaleb checked his are before he allowed them to try) turns out it is somewhat known not to work on kids his age. So they applied a different numbing cream and told him they would be back.  An hour and a bit later a different nurse came back and decided that the cream was placed in the wrong spot so it was removed and more cream was applied and they told us they would be back to check on it and add warm blankets to help warm up his body.  (the room was cold!).  

We met with the School liaison and went over all of his courses that he has for the year.  We talked about what Kaleb's goals are and how his past year went.  Kaleb made it very clear his wish is to be in the school as much as possible.  We will be meeting up with her again on Thursday to sign paperwork (gives her permission to talk to the school about Kaleb's medical needs) 

Kaleb's Dr came in and shared some of the results of the PET scan.  She does not have all of the information yet as she needs to talk to the tumour board to confirm her findings.  However we do know that Kaleb has Stage 4 Hodgkin Lymphoma.  It is in his neck and in his chest but not in his bones.  Chemo treatment starts today.  He will have 2 cycles of chemo (that will take 2 months as long as there are no issues) then they will do another PET scan to see how the cancer is behaving and reacting to the chemo.  Then they will tweak anything that needs adjusting before doing 4 more cycles of chemo.  We will find out if he needs radiation treatment after she has talked to the tumour board and after his first few rounds of chemo.

A NICU nurse came into the room to get Kaleb's IV in as his PICC line was scheduled with in the next 15 minutes.  She got it in the first try and was able to get all the blood tests drawn with time to spare!  She was also surprised how "juicy" and big Kaleb's veins were!  Apparently Redheads tend to have small veins.

Kaleb's PICC line was installed with no issues and we were allowed into the recovery room as he woke up.  Without fail he asked to talk with Amelia but understood she was in class and that we would call once she was done school. So he drank some ginger ale and chatted with us.

When we got back to the PMDU he was allowed to eat for the first time that day!  They checked his vitals, talked to the Dr and was given permission to send us on our way.  Matt and I were given instructions on how to care for his PICC line and what to watch for.  Sadly we found out that there was some hiccups with getting into the Ronald McDonald house so we booked another night at the Lamplighter and headed out to get some food.  

After grabbing our food and getting into our hotel we called home to make sure everyone was ok.  (we had seen that there was a tornado that hit on social media) All is well everyone was safe just in the dark.  Our roof is in need of repair (we knew this already) but the water was coming in through the light in the kitchen this time.  Our friend Dave is on it and we are waiting on the shingles to arrive.  Thanks Dave!

A good friend of mine texted me yesterday and reminded me it is important to take a bit of time for me.  I am not so good at giving myself permission to have self care time.  So I did and fell asleep in a bathtub.  I never realized how much i needed that.  Thanks Jen!

Blessings for the day:     the NICU Nurse who got the IV in 

                                        Meeting Dr. Cool 

                                       Meeting Ollie

                                       Eating Tacos from Qdoba