I know this follow-up post is long overdue. Last night Bridget went to the ER with a 103.4 temperature and it was a reminder to me to send out an update. The good news is that the fever seems to just be due to a viral upper respiratory infection. They did a chest x-ray and her lungs were clear. She’s been sick for about 5 days now with these cold symptoms. She missed a few days of school because of it which really upset her because it is the end of the marking period and she had some assignments to make up before today. She doesn’t want her grades to suffer. Thankfully, all of her teachers are wonderful and are allowing her to take care of business Monday morning. Understandably, she has missed quite a few days this first quarter due to appointments, labs, scans.  I’ll get to all those later. But for now, at least she is missing school this week due to a normal childhood illness.

Bridget loves her school. We are so happy we made the decision to send her to Loch Raven. She loves her teachers and her classes- especially the performing arts class.   She has a few small roles in the school play in December- 57 Cinderellas. She missed the auditions early in the quarter, but the teacher had some roles saved for her. She’s made lots of new friends and has not had any issues with any students. In fact, they have all been warm and welcoming. She went to her first middle school dance last Friday- a costume ball. She embraced her baldness for Halloween and dressed up as Eleven from Season One of Stranger Things.

We also had an amazing time in Disney in mid-October. Bridget was not able to perform with the dance studio, but Allison did a great job on stage. Bridget was just thrilled to be in Disney. I got her the disability pass so we didn’t have to wait in the long lines and I rented a wheelchair at the parks so she didn’t have to do so much walking- as she is still having issues with her feet and ankles swelling.

The doctors’ now suspect the swelling is coming from her blood pressure medication. She took half a tab daily pre-cancer, but through her treatments, it was basically quadrupled to 2 tabs daily. We are in the process of working with cardiology to perhaps switch to a different medication but are waiting until she recovers from this current illness. We have a follow-up appointment with them on November 25^th.

She is slowly trying to get back to dance. The swelling was the biggest issue- and the fatigue when she was still freshly out from chemo. She has gone back for ballet once and did go to her new lyrical class (which she really enjoyed), but hasn’t gone to tap, jazz, or prep-pointe yet. We actually had hoped to make this week the first week that she went to all her classes, but the current illness threw a wrench in those plans! Maybe next week- we’ll get there!

So, the big question you are all wondering about I’m sure is how she is doing in terms of her cancer. Bridget had her follow-up PET Scan on 10/23. We then had our one month follow-up in the oncology clinic on 10/25 to get the results. We had no doubts that we would be going in, hearing the good news that the cancer was confirmed to be completely gone, and planning her end of treatment celebration. Unfortunately, things didn’t go as planned. There is still a small “hot spot” of activity on the PET Scan. The radiologists can’t tell if it is inflammation, infection, or lymphoma. At the visit, they weren’t sure of the next steps. They needed to meet with the GI, surgery, lymphoma (pediatric and adult both) teams and discuss. We left there discouraged and uncertain. We decided to keep this news quiet, at least until we knew the plan. We waited through a very long week until 11/1 when a decision was made. There were two options. The first was to simply wait six weeks and repeat the PET scan to see if the spot had resolved.  The second was to do a colonoscopy ASAP and biopsy the area. The issue is the location. The area that has activity is a small area in her bowel wall, right next to the ileocecal valve. The GI and surgery teams weren’t sure if was feasible to biopsy this area easily. There was a chance they could biopsy and come up with a negative finding, but not be confident they were in the exact spot. In the end, after all the meetings of all the minds, we were told the team unanimously voted to just repeat the scans in 6 weeks, as everyone is hopeful the area is still healing from the aggressive attack on the tumor that was there.

So now we wait again. We are following the doctors’ lead and remaining positive. Life carries on and we are trying to live it to the fullest…with the exception of this darn upper respiratory infection. We have some fun weekends planned over the next month for Bridget, so hopefully time will fly!

In the meantime, we are focusing on the positives. All of her labs have recovered (with the exception of her lymphocytes, which can take six months). Her hemoglobin is actually over 12, which is higher than it’s been in a year- even before the cancer diagnosis. Her energy levels are pretty much back to normal. Her ANC and platelets are in the normal ranges too- so no more risk of bleeding or increased risk of infection. She is still immunocompromised because of her anti-rejection meds- but we are back to where we were pre-lymphoma! And her hair is starting to grow back! Bridget is thrilled that it seems to be coming back in blonde. She was worried it would grow back darker, but from what we can tell, it is still pretty light.

She does still have her port a cath in. They will remove that surgically once we have confirmed she is cancer free. That brings us back to last night and the trip to the ER. Because she still has the catheter in, we are still required to take her to the ER if her temperature goes above 100.4, so that they can do blood cultures to rule out a systemic infection (that may have stemmed from the catheter), and treat her with prophylactic antibiotics (just in case). As I mentioned, they think it is unlikely the cultures will come back positive, but we won’t know for sure for 48 hours. Given her symptoms, they think the fever was just from the respiratory infection.

So, Bridget stayed home from school today, the last day of the first quarter. She finally watched the last two episodes of FRIENDS this afternoon. She has been putting it off for awhile, because she didn’t want it to end. She will miss the show and the characters. It’s kind of nice though. She had her FRIENDS to get her through the summer and the end of treatment. I’ll forever associate the show with Bridget’s cancer journey. She’s actually now sitting at the table working on putting her FRIENDS Lego set together, her reward for finally ending the show. The Lego set was a gift from some friends she got not long after her last treatment. So as the first semester of school comes to an end, and Bridget’s viewing of the FRIENDS series comes to an end, we are ready for some new beginnings. A new quarter in school, a return to dance classes, and HOPEFULLY in about a month a confirmation that she is cancer free!