Amber’s room is feeling the LOVE!

💜 Thank you 💜

A little bit of good news tonight – preliminary results from the MRI show that we are in a relatively good spot (details further below).

Amber had about 7 nurses getting her ready for the big trip down for the MRI. This is a very complicated process where the nurses have to switch out all of the devices for portable MRI compatible devices. As the crew was prepping her, her numbers started elevating and her head pressure was getting a bit too high. There was a good chance the MRI wouldn’t be happening again. However, Dr. Martin came in, gave the okay, and off we went.

After signing some forms and removing all my earrings and security badge, I got to go in with her. I have never seen an MRI machine before and can tell you that it’s very intimidating. If Amber was awake I’m sure she’d be so scared (I was for her). Our fabulous nurse Alex, and 3 others finally assembled her on the machine, gave me some ear plugs and then it began.

The machine is huge and loud. While I was sitting there I was wearing Amber’s Magic Power Blanket and brown scapular around my neck, where I prayed until she was done, which was about an hour.

After she was done and Alex and crew got her assembled again, it was time to head back. On our way back to her room we ran into Dr. Martin…

He didn’t pull up a seat to sit and talk to us so we knew that maybe finally, we get some good news instead of devastating news.

The preliminary review of the MRI shows:

— no damage to the left hemisphere.

— no damage to the brain stem.

— no residual from the tumor

— some damage from where the stroke/tumor/bleeding was on the right side, but we already knew that there was some damage here.

Dr. Martin still needs to meet with the tumor review board to thoroughly go over the results, but this is a good start.

Matt and I are relieved but realistic. We celebrate this as a win, but we have a long road ahead. We’re just starting from a somewhat better spot than we could have been.

Our next step is to meet with Oncology, and start understanding what treatment may look like.

We continue to pray, for strength for Amber, and for the Doctors, Nurses, and other Medical Staff that are fighting this battle valiantly alongside us.

Amber did very well with her head pressure numbers. However, her blood pressure was on the high end throughout the day. They increased her sedation to help relax her more to try to bring it down. We are hoping she can get a restful night.

Tonight was the Saint Joseph healing prayer service for Amber. At 7:15PM, Matt and I said prayers with Amber. We also said a special prayer tonight, a prayer to Saint Peregrine, Patron Saint of persons suffering with cancer. This Saint was brought to my attention today by our very nice custodian, Maria.

Thank you all for taking the time and energy to go out to St. Mary’s to pray for our very sick little girl. That means the world…

In case you would like to say a prayer to Saint Peregrine:

O great St. Peregrine, you have been called “The Mighty,” “The Wonder-Worker,” because of the numerous miracles which you have obtained from God for those who have had recourse to you.

For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.

(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
Amen.

(Written Mar 28 from memory of the day)

I awoke out of sleep about 2:30 AM Thursday morning to Ryan calling out in his monitor. “Amber!!!”. “Amber!!!”. (Now, for those that don’t know, Ryan’s room is right across from Amber and their rooms are on the other side of the house from our room.). So as Ryan yells out his final “Amber!!!”, I roll over, am about to grab his two-way monitor to tell him to go back to sleep, when I notice Amber’s monitor’s red lights were going haywire, but no volume (sometimes her monitor acts up). I go to her and see what’s wrong. She is calling out and crying a bit saying that she had a headache, grabbing the right side of her head. So I go and grab a cold face cloth and have her lay back down. I then go to grab the children’s Advil out of our overnight bag in my bathroom, go fix her monitor and tell Matt what’s going on.

We give her a dose of the medicine and a few minutes later, she throws it up. So now we’re thinking, oh boy…is it a virus, the flu maybe? I wanted to sleep with Amber in her bed which I’m glad I did because every hour on the hour she threw up. By 6:50 AM I got up to go get ready for the day and get the other kids ready. Around 7:20 AM, I went to go check on her, and she’s on the floor. My heart skips a beat…I go over and and try to get her up, she doesn’t. So I have to pick her up off the floor, like a sack of potatoes and put her back in her bed. She looks like she’s sleeping…like it’s been an exhausting night and just sound asleep. I go and get Matt. We don’t know what to do at this point because we don’t know if she’s just really tired or what. We try waking her, no real response. Matt tells me to go re-wet the face cloth. He puts it on her and she moves, slightly…and then goes back to “sleep”. We try this a few times but no real change. My heart skips another beat. I grab her water and go put some juice in it thinking maybe she’d be up for that, we hold her up and try to get her to drink… still nothing. Matt tries yelling loudly …nothing…

Matt looks at me, I look at him, and we know. My stomach drops. We know something is very wrong. We throw out scenarios like should we or shouldn’t we…but ultimately, we choose correct. We throw pants and a coat on her, grab the garbage can in case she throws up again. Matt picks her up and tries loudly saying to her “Amber, you gotta wake up… otherwise we have to bring you to the hospital…”. She doesn’t react.

Remember that 4th Nor’easter we were supposed to get with a predicted 10 inches…I can only Thank God that that did not happen because getting to Backus could of been treacherous… And later on, the Life Star Helicopter wasn’t available because of the weather, so trying getting to the CT Children’s Medical Center by ambulance, could of been life-threatening.

While Matt’s at Backus with Amber, they immediately take her in and begin tests. After seeing something unexpected with her eyes (different size pupils), they decide to run a CT Scan. During this, Matt calls me on my cell and tells me to come down. We already know this is not going to be something simple.

Dr. Adams tells us they see a mass on the brain, and that Amber needs to be taken immediately to the CT Children’s Hospital in Hartford. This is devastating news but we don’t have time to let it sink in as we have to move fast.

As I said earlier, the Life Star Helicopter was not flying because of the potential weather, so I jumped into the ambulance with the Life Star crew. They put the flashers and sirens on. Although we made it there in top speed, it was the longest ride ever.

We arrive at CCMC’s ER where Amber and I were immediatly whisked into one of the ER rooms. I was intoduced to Dr. Martin, Director of Neurology, he gave me the run down of the situation, had me sign papers and off they brought her for a CT Scan, and then to the OR around 10AM. I was brought upstairs to the 3rd floor waiting room. Matt was on his way.

(Written Mar 28 from memory of the day)

It’s funny how life throws you a curve ball sometimes.

Wednesday, March 21st was like any other typical Wednesday except for the fact that there was a bit more anticipated excitement. Tomorrow, Matt and I would be picking the girls up at school for 12:30pm sharp, because FINALLY, our long awaited annual family reunion to Cape Cod would soon be here!

So we had our dinner of pancakes, at Amber’s request…played some video games, chores, showers and time for bed. After Matt read and said prayers with Ryan and Amber, and tucked them in, Amber complained to Matt about having a bit of a headache. We didn’t think much of it, dismissing it off to just a lot of craziness of the day.

And everyone went off to sleep …