Tuesday was a long day at Hopkins. We arrived at 9:15 a.m. for our PET SCAN and finished there around 1 p.m. We grabbed a quick snack since she was starving (wasn’t allowed to eat after midnight for the scan) and then went to Pediatric Cardiology for her ECHO. We got the ECHO results right away. All looks good. No change in her heart function after the second course of chemo. The next two cycles don’t include the chemotherapy that is known to damage heart muscle, but we’ll continue to get ECHOs to keep an eye on things.

After the day of testing, Bridget wanted to stop at Walmart/Target. She misses normal things like that. So we masked up and actually hit both stores. She was able to use one of her gift cards to get herself a few little things to take with her for her next admission. She said after she’s done with her treatments she wants to go back and shop for things to donate to the hospital, specifically prizes that can be used for Hospital Bingo.

Wednesday we arrived as expected at 8 a.m. for our appointment and not long after we discovered a bit of an issue. Unbeknownst to us, Bridget was scheduled for a lumbar puncture at 9:30 a.m. We knew that Cycle 3 and Cycle 4 were different than Cycle 1 and 2, but no one had walked us through them. I did have a “road map” of the treatment plan, but no one had consented us yet to each of the chemos and steps, as they had for the previous two cycles. The appointments in the system said lab, chemo, and dr. visit. There was no mention of a lumbar puncture, which is usually listed. Having to get a lumbar puncture was not the issue. She’s been through 5 of them already, so it wouldn’t have been too big of a deal. The issue was that we had fed her breakfast. Since she ate breakfast, she could not get anesthesia. So, we had to meet and discuss the options. I felt so horribly that I fed her breakfast and messed things up. Anyone who knows me knows that I am a rule follower. If I had any inkling that she was supposed to get a lumbar puncture I wouldn’t have fed her breakfast. On the paperwork I had, the lumbar puncture was written for Day 2…so I expected it to be on Thursday. However, the team had changed their minds, and changed the plan in the system…but the change had not been communicated to us. Two of Bridget’s main doctors were on vacation the week prior and I guess everyone assumed someone else had told us. Anyway, we now had to regroup and figure out what to do.

They gave us two options. We could stick with the original plan- have her start the chemo and get the lumbar puncture down in the OR on Day 2. Or she could have the lumbar puncture without going under anesthesia right then and there.   Many kids do get the lumbar punctures without general anesthesia. Usually it is the older kids- the teenagers. Some prefer it because you don’t have to go without eating, don’t have the side effects from the anesthesia afterward, etc. The nurse practitioner said the youngest she ever did it to without anesthesia was an eight year old. Everyone thought Bridget would be a good candidate.   Everyone except Bridget, that is! The idea of being awake and getting a needle in her back was not appealing to her. She flat out refused at first, but after a little reassurance and a little bribery, she consented. The child life staff member was great. Just as she had walked Bridget step by step through what would happen the first time her port was accessed, she explained a lumbar puncture to her. It was pretty ingenious actually and educating for even me. She used a slinky to represent the spine and showed how the needle would go in the space between the bones to remove some spinal fluid and replace it with the same volume of chemotherapy. She used the slinky to show how when the body is curved, the gaps between the bones open up and make it easier to access. And so we proceeded, right there in the exam room. With Bridget on her side curled up in a ball to curve her spine, Scott and I were on one side facing her, along with Lexie from Child Life. She held my hand, along with a squishy, with one hand and had Aaron’s thinking putty in the other hand. She requested Friends to watch on the ipad during the procedure. The nurse practitioner and nurse worked on the other side. Bridget was given a dose of Versed and, well, after that there was not a care in the world. (Well, she did feel it and give my hand quite the squeeze when the lidocaine injections were being given, but after that she didn’t feel anything…except happiness).

Bridget had herself a good old time. She was singing and laughing. She said that I had seven eyes and Scott had two noses and looked like Squidward (from Spongebob). She declared the Friends theme song as the best song ever written (though when questioned, she said the soundtracks from the Mean Girls and Wicked musicals were probably equivalent). She sang to us about pink fluffy unicorns dancing on rainbows (it’s a real song, feel free to look it up, but be prepared for it to be stuck in your head for days). Then she sang the “P2111B2B…SEVEN!!!!” song to us over and over. It took us a minute to realize she was singing the barcode on the electrical outlet. Suffice it to say, she was feeling very good and the nurse practitioner said she hadn’t had a patient laugh so much during a lumbar puncture in all of her experience. The whole thing took about 15 minutes. Then Bridget had to lay flat for a half hour afterwards (she was still singing and chatting away and laughing the whole time).

She did wonderfully and we are so proud of her. She said she would do it again without anesthesia if needed. It does give us more flexibility as it can just be done right in her room and no fasting or recovery is needed.

So, after lying flat for a half hour, they hooked up the Rituxan, the first chemo for Course 3. We were still in the outpatient center while we were waiting for our room to open up on the inpatient side. The doctor came in to go over the plan for the rest of the course. First up- the scan results. I know you’ve all been anxiously awaiting. The PET Scan showed complete resolution of her tumor. There is no evidence of disease. The scan was negative!   Of course we are over the moon- this is excellent news! Actually, I can’t even put it into words, I’ve just tried to rephrase the past two sentences several times to have them convey how happy/grateful/relieved/blessed we are…but I can’t seem to find words that are strong enough! Our prayers were answered; our wishes came true, etc., etc!

But we still have to get through two more courses of chemo to complete the treatment so we have to keep our heads in the game. Now that the tumor is gone, we have to make sure it stays gone! For the next two cycles she will get the Rituxan and Methotrexate on Day 1 (both of which she had previously in the first two cycles), followed by Cytarabine given from Day 2 until Day 6 continuously (around the clock). Thus the need for such a long hospitalization. Dr. Brown explained that Cytarabine has some common side effects that are different than the other drugs. One is that it can cause very high fevers- sometimes over 104 degrees. Secondly it can have some skin reactions, some redness, rash or peeling of the skin. This chemo is also known to be one of the worst on the GI system, with mouth sores and mucositis throughout the GI tract. Given that Bridget seems to be prone to GI side effects, as evidenced by the ER admissions after each of the last two cycles, this is something to watch closely. However, not everyone gets all the side effects, so we will just think positive and be prepared if any come along.

After meeting with the doctor in the clinic, we passed the time playing Hospital Bingo (it was Wednesday, after all, so we didn’t want to miss that). She won this week- a floppy stuffed dog- and then our room was ready by 4 p.m. Since then, things have been going well. Her stomach issues from the last cycle have resolved. Her blood counts were improved. To restart chemo, the ANC had to be 1000 and the Platelets had to be 100 and she met both of these criteria. The only residual side effect hanging around is a bit of nerve pain in her feet- but that will go away eventually and none of the chemos for these last two cycles are known to cause that. So, she’s been in a good mood and we’ve been in a good mood. It’s been a good few days. We’ve had some visitors and played games and, of course, gone to the great room daily to make crafts. We are three days into Cycle 3 and she has yet to have any of the side effects.

One last note is that her hair is gone. We took a trip over to the “Image Recovery” center on the other side of the hospital in the adult cancer center. This is a little salon/boutique where they will shave your hair for free. It was just time. 90% of her hair fell out on its own and the rest was expected to fall out any day (and was falling out slowly)…but things were starting to look a little crazy. The nurses suggested it and Bridget thought it was time as well. One of the nurses even walked over with us, since Bridget isn’t really supposed to leave the floor with her continuous chemo running. As expected, she still looks gorgeous. She is lucky as her head is perfectly shaped and she has a beautiful face!

So, we are cherishing these good times in the hospital and counting down the days until end of treatment. This cycle will end as it started, with a lumbar puncture on Tuesday. Whether it will be done under general anesthesia or not will be up to Bridget. They told us they can do it right in her hospital bed if they do it without anesthesia and I think that appealed to her- but she has a few days to decide.