Monday, August 20, 2012
We started our last and final round of chemo on Wednesday, July 25, 2012. I had hoped that this round would be quick and easy and in and out and done, but that wasn't quite the case. The day started very early since we had to be at the hospital at 7am for anesthesia, an MRI, an echocardiogram and his final IT (intrathecal) chemo. The MRI was clear and the IT chemo went fine.
One of the chemotherapies that Drew receives can effect his heart and that is why his heart function is monitored so closely with frequent echocardiograms. A couple of months ago, (about a month after his septic shock episode) his echo showed some changes and we decided to leave that particular chemo out for that next round. The question at the time was whether or not the echo changes were true changes from the chemo or if it was possibly still a result of the sepsis in which case he would eventually recover that function.
This latest echo still showed decreased function (his left ventricular function went from normal in the beginning of all this to low normal/mildly depressed). According to the criteria of the protocol, he could still technically get this next dose of Doxorubicin, but there would be significant risk of cardiotoxicity. So here we were left to make a decision on whether or not to give this particular drug weighing risk vs benefit. We decided to not give the last dose of Doxorub. This protocol actually has 2 different arms at the end (last 6 rounds), one arm for those kids that have received full craniospinal radiation and one for those that only received focal radiation. We basically ended up following the other arm which substituted one chemo for another and then added an additional dose of another. We have been very blessed to be working with one of the top neuro-oncologisist in the nation who thankfully has a great working relationship with the doctors who were in charge of this study and after consulting with them, we all felt very comfortable with our decision.
Here he is waking up from anesthesia like a rock star!
Grandma & Papa brought Brooke & Dallin down for a visit. Drew insisted that Papa come to the new hospital b/c he hadn't seen it yet and he wanted to show him around. However, by the time they got there, Drew was feeling pretty sick and didn't even want to get out of bed.
That night he spiked a fever, which is only the 2nd time ever that he has actually had a fever during chemo. The first time it was related to his IT chemo and only lasted a couple of hours. This time we thought it might be the same thing, but he kept spiking and then his white count shot up which had them worried about an infection. He was so sick this round and couldn't stop puking either which hadn't happened since round 6. We ended up staying an extra day to make sure the fevers were under control and we weren't dealing with an infection.
I wasn't quite sure about leaving when this is all he would give me when we were supposed to be celebrating our last inpatient chemo.
On the drive home, he had his head in the bucket, puking, the whole drive and was screaming that his head hurt saying, "Mommy, take me back to the hospital!" It then hit me that this was probably due to his spinal b/c every time he would get up and move he would get sick and this was exactly what happened after round 6 when I suspected he had a spinal headache from his tap then too.
We came home to a little welcome home party, but Drew was too sick to care.
His last actual dose of chemo was done at home on Monday, July 30, 2012.
Drew's home health nurse MaryAnn, giving the last dose of chemo. She has been to our home twice a week for over a year now and become a big part of our lives and it will be hard not seeing her so often.
She brought him a big Zero ballon for NO MORE CHEMO!
We had 4 platelet transfusions this last round. He picked 6 packs of army guys out of the toy box this day and had me set them all up for a battle - 300 army guys in case you were wondering (and we had this battle twice!)
Fever hit at 4am Saturday, August 4, 2012
We were there for 4 days, but it all appeared to be viral, so just had to wait for counts to recover to actually kick the fever. Here Drew is holding the bag of blood from his last blood transfusion!
Last inpatient stay!
Wanted to get a picture of the PICC line b/c once his counts recovered and we knew that his electrolytes were holding ok, he was eating and drinking and gaining/maintaing his weight, and he was finished with his antifungals, we were ready to pull it!
We were supposed to have a sleep deprived EEG, so had to keep Drew up till midnight and then wake him at 4am. We enlisted his 9 year old cousin Tyler to help with the "party". While we did a great job sleep depriving him, it also made for a very cranky 4 year old (of course) and he refused to let the, not so friendly, tech do the test.
Neuro decided it wasn't essential to have the EEG since he didn't even show seizure activity on the EEG after his febrile seizure and said we could just wean off the seizure meds anyway. Had I know that, I wouldn't have put us all through the sleep deprivation in the first place!
Luckily we both caught a little nap during his 2 hour antibiotic infusion(prophylactic for pneumonia).
Then they pulled his PICC line!
Wednesday, August 15, 2012
My Grandma & Grandpa (Drew's Great Grandma & Great Grandpa) were in town for a couple of days and we were able to visit.
We packed up all of the home health supplies and cleared it all out. The kids finished off the flushes with a squirt gun fight.
Brooke set up some bucket targets to hit.
Drew couldn't have been happier to see those flushes go. He tasted every one of them going through his line.
Dallin is always happy to be included and took a turn.
And finally a picture of Kelsey b/c she is usually moving too quickly for me to catch with the camera on my phone.
While we are done with treatment, this is by no means the end of this journey. We will continue with monthly follow up appointments in the brain tumor clinic and MRI's every 3 months. We will also have other follow up appointments with cardiology, audiology, endocrinology etc. as time goes on. We have increased our physical therapy schedule as we hope to regain overall strength and work on the weakness in his right leg.
Drew will start preschool next week and couldn't be more excited to join "the real world" again!
We can't thank each of you enough for all of your love, prayers and support which have strengthened us and carried us through these last 14 months.
Up next.....Drew's Make-A-Wish trip.....to HAWAII!