Good News – Amber’s MRI scan came back looking good!

It was a pretty long day, with us leaving the house around 8:00 and getting back home about 5:00.  We started with an early visit with Dr. Gillan in the Hem/Onc clinic, then went downstairs for the MRI, and returned to Hem/Onc to get the results.

The scan came back looking good – there are no signs of any regrowth, at all!!  This isn’t just “good” – this is as good as it could have possibly been.  As Dr Martin said to us today: there are times when we need to have detailed, serious conversations, but then there are days like today – today is a High Five Kind of Day!

We have used several metaphors and analogies over the past 4 months — Eating the Elephant and the Whale, a Superhero Battle, a Journey of Many Steps .  Well, today we took a megasize bite of the Whale, won a significant battle against a Supervillain, and passed an important milemarker in our Journey.

But we are not done with this.  Cancer is not so easy.  A clean scan today does not mean she is cured — it just means that it isn’t aggressively attacking at this moment, but could be still hiding somewhere in that brain.  We will be returning for MRIs frequently (every 6 weeks, for now) to watch carefully, and with the help of CCMC we will be ready to act when we need to.  We still have a lot of Whale left on our plate, several Supervillains in this war, and much distance left of this Journey.

But today – we celebrate.  We thank the doctors and all medical professionals that have helped get us this far.  We thank everyone who has been praying, sending us positive thoughts, and supporting us through this.  We offer a prayer of thanks to God for granting us such a blessing today.  And we continue to pray, and ask others to pray, for Amber’s positive results to continue into the future – until we have devoured the Whale, finished off the final Supervillain in this war, and reached the point of this crazy Journey where all we see is smooth sailing ahead.

Thank you all, God Bless.

Wow, what a busy day today!

We were out the door by 7:20 this morning, for a 7:45 radiation treatment. Only 18 treatments left to go! It’s funny – as horrific as it is to have my 6-year old go through radiation treatments, the team at Backus is so nice, so good to Amber, so good to us, that it doesn’t feel as bad as it should. I guess that’s a good thing – it’s just the dichotomy that strikes me so much.

Then off to Children’s Medical Center in Hartford for a 10:30 check-in. By noon, Amber had her new g-tube in place, and had a couple dozen stiches removed from her scalp. All those Stinkin’ Stiches, as she liked to call them, are gone – and she is healing up really well. Again, the contrast between the very visible healing of her scalp and the unknown of what the GBM may be doing inside her her head strikes me deeply.

And then, after sleeping off the sedation for almost 2 hours, we headed upstairs for a combo visit with Oncology and Nutrition. Amber’s weight is doing very well, so we are starting to cut down the supplemental overnight feed. Even after the sedation and procedure, Amber was asking for a snack, so there are definitely no appetite challenges there! And no changes with Oncology, continuing the course with radiation until the end of June.

So we continue with this new status quo, each step showing positive progress, taking progressive bites of the whale (with much of the elephant carcass now behind us), but knowing that we are far from out of the woods. We pray to be shown that path out of the woods, no matter how many twists in that path, and no matter how often we stumble.

A quiet holiday, recovering from the activity of yesterday. The weather cleared enough for the family to get out on the back deck to grill some hotdogs and hamburgers, and light off the fire pit for a while. It was a good day.

Today we remember those who made the ultimate sacrifice for the freedoms we enjoy. Our prayers of thanks go to them today.

Today was a big day – the Dance Recital! Brianna and Marie put on great performances with their groups. Brianna has been studying hip-hop this year, and Marie has been studying acro. I’m very proud of both of them for sticking to the classes and rehearsals, getting up on stage in front of that audience, and doing so excellently. I might be a bit biased, but I think they were the best ones up there! And as a special treat, Caron and her sister-in-law Meg performed too, with their adult tap class! What a great show – I couldn’t be prouder of them too!

Today was also a somber reminder, as Amber should have been up there too for her ballet and tap numbers. But she had a good time, sitting with me in the audience. And a special thank you to the Luis Pabon Dance Arts Center, because at the end, Amber got to go up on stage and be part of the final bow, with all of the dancers and instructors. We appreciate all the support we’ve received from LPDAC over the past couple months too – thank you so much.

Amber says she wants to get back up there on stage next year – so let’s keep that motivation going and get her there!

… and “normal” is a wonderful thing. While Caron and the older girls went off to their dress rehearsal for the upcoming dance recital, Amber and Ryan stayed home with me. A quiet day, eating lunch outside on the deck, and getting a little walking exercise with a trip down the driveway to get the mail. Ryan is a big help with Amber, making sure nothing is on the floor that she could trip on, getting her a drink, making sure she is comfortable.

It’s hard to fathom sometimes that the challenge in front of us is so huge, so critical. But, we have to just take one day at a time, and so having this kind of day is a beautiful thing. And we thank God for each day, and for all the people that are helping Amber – from the doctors and nurses, to those praying for her, to her little brother.

Sundays are for rest, and today was a quiet, restful day.

While Caron took the older girls to a birthday party today, Amber and Ryan stayed home with me. Ryan helped me with Amber’s exercises, making sure nothing was in her way as we walked around, and giving her something to reach for while stretching the arms. Steady progress as her confidence and balance grows, walking more, holding onto the table as she goes (with me hovering no more than 2 inches away, of course).

It’s challenging for me. We cheer her on, make a big deal out of each positive step. But it tears me up inside, watching this six year old’s strength and determination. Amber shouldn’t have to relearn to walk, to move. But she keeps at it, determined to keep progressing. I don’t know if I’d have the same determination in her place; at the very least, I’d have a few meltdowns along the way, crying over how unfair this is. But she doesn’t stop, doesn’t meltdown – she just keeping going, and does so with a smile.

I pray she keeps this determination and strength, and happiness. Tomorrow is the third day of radiation therapy, the third day of attacking the whale. And there are many days of this ahead. So we rest today, and get back at it tomorrow.

A nice, quiet, simple day today. Lots of phone calls to make, appointments to schedule, etc., but just an easy day with Amber at home. Amber practiced her walking with us, played with her brother and sisters. And they all laughed together, beautifully.

And while we know that not every day will be like this, we’re going to enjoy every one we get.

(We’ll write a separate post later about getting our mask for radiation treatments today)

Short and sweet – Amber came home today!!!  It has been 50 days since all 7 of us (including Rea!) have been home at the same time – and it is wonderful to finally be here.

Here are a few pics from our day.

Everything is lining up for discharge on Thursday! Of course, nothing is done until it’s done, but we are almost there!

As nurses stop in to say bye because we won’t see them over the next few days, it’s a bit funny to know we’ll miss them. We wish, more than anything, that we weren’t here, that this never happened. But – it did. And we met some incredible people who have helped us through this, who have become a part of our lives over the past 7 weeks. As anxious as we are to get home, and even knowing we will be back frequently as part of the ongoing treatment process, we will miss the people here. The nurses, the admins, the custodians, the techs, the security guards, the PCAs, the doctors, the social workers, the therapists – they have all been part of this with us. And we thank all of them so much for helping Amber recover so well.

Even in these last days here, Amber continues to push, to develop. Today she walked up and down the flight of stairs in the PT gym twice, then down the hall to the elevator with her walker, and from the elevator all the way down to her room. Then during OT, she is supporting herself on her LEFT elbow, and squeezing that LEFT hand, and moving the whole LEFT arm! I didn’t think we would see that before we left here, and was nervous about what that would mean. Still a lot of work to do with that arm and leg, but compared to where we were 48 days ago, it’s amazing progress! And even though she was exhausted from all that work, she still wanted to attend two art sessions today!

So, a few more days and we’ll be home. Now we pray that Amber is as strong, determined, and successful in this next phase of treatment.

Thank you all for being part of this with us.