So NED decided to take a little bit longer to show up than normal, but when it did we got the party started! Yesterday was an Amazing day! Of course starting with our appointment with Dr. Jayson Stoffman, Aleksei’s Oncologist at Cancercare Manitoba!
So it turns out that this little troublemaking spot has been showing itself on scans for at least a year. When they reviewed the 02/26 MRI and saw the same spot, unchanged from the 01/31 MRI they decided to go back and review previous scans which demonstrated that this spot has been there at least back until January, 2013. They also determined that there is a correlation between the visibility of it and the scanner on which the images were obtained mostly because of the slight differences in slice thickness between the two scanners. Long story short … enhancing scar tissue … MRI again in 2 months.
An intense feeling of happiness, relief and pure joy filled the room … for Aleksei first and then for us and for Jerzy … and for Dr. Stoffman … my goodness how satisfying it must feel for him to be able to deliver such phenomenal news!
The rest of the day was awesome! The three of us went to lunch at 529 and then in the evening we celebrated with friends at Brogue Gastropub … it was an amazing evening!
YOU have ALL been noticed!
Thank you for all the love and support over these last few weeks!
With love and gratitude from Alli, Don, Aleksei and Jerzy!
NED!!! Will post more later! But for now this is how we are feeling …
NOW we wait … the scans are done and now we finish riding out this storm … one sudden gust of wind that knocks the breath right out of you at a time. It’s tough … I can’t deny that. No matter how diligent I remain in my attempts to stay the course there are sudden cracks that form in the outer layer that have me one minute wanting to shout profanities at the top of my lungs and the next just letting the blubbering mess inside of me escape and beg for this all be a nightmare. I am trying to take the advice I have told so many … try to think about what might go right instead of only what might go wrong.
Distraction helps … Monday morning it was a yoga class, a visit with Don’s brother in the afternoon and in the evening a stroll around Costco … Tuesday was difficult for Don and I waiting outside the PET scan department for most of it … Wednesday morning well what can I say about going on a field trip to the Science Museum with Jerzy’s class except pure pre-occupation at its finest! Wednesday afternoon we got the MRI out of the way and now it’s today. The day before results. There is not a corner of this house that will escape my cleaning wrath today or hmmm perhaps a little retail therapy will help!?
But the BIG picture … the general feeling around the Minarik homestead … especially and always when we are all home … is one of hope. We are a loving, positive and good natured family and a normal day for us is one that exhibits that. When the four of us are home together we are most often all in the same room … perhaps all doing our own thing … but always at each other’s sides. We do not dwell in any negative possibilities … we just have fun, laugh and love each other. Corny as it all may sound … it is just our natural way.
So as we ride out this storm, one day at a time, again I have to say thank you for all the kindness and compassion. I am doing the best I can to take care of myself and stay positive but it would be impossible without the support of so many wonderful people. We are so blessed and our gratefulness knows no bounds!
I am overwhelmed by the show of kindness, compassion and genuine concern we have received since last Tuesday. To all of you who continue to reach out to us, who send reminders that you are thinking about us, the phone calls, emails, texts, messages, the little gifts, invitations to the lake, to dinner and play dates for Jerzy, each day, several times a day we receive some form of expression from someone who cares. I just want to say thank you … whether we see you in person or correspond virtually … we appreciate your un-flinching ways!
We are keeping busy … we know from experience that in order to pass the minutes that make up even just one day of waiting for answers to the questions we are so desperately holding in our hearts there is no better way to do that but to be amongst those people that also need to be around us … because they too are waiting and hoping.
I have been spending most of my waking hours, as well as many of my should be sleeping hours, getting prepared. You know the saying, expect the best, prepare for the worst right? That’s what I have been doing. I am very much expecting the best, but I am an organizer and a planner so I have reached out to my friends in the Sarcoma world and to some of the leading Sarcoma specialists. I have received emails back from 3 Oncologists who all assured me that the way Aleksei’s situation is currently being handled is appropriate.
None of this is being done out of disrespect for our Oncologist at Cancercare Manitoba, Dr. Jayson Stoffman. We respect him and we trust him and he will always be Aleksei’s Oncologist, but if things take a turn for the worse, we feel we must gather up the opinions of more than just a few in the business … we must be aware of what they are prescribing and researching at the different sarcoma centres in order to make only the very best decisions.
For now I am just happy that I have made these connections, but by the end of next week I hope that it will be proven that I have been wasting my time. We go for a PET scan on Tuesday, February 25th, an MRI on the 26th and on the 28th we will get the results. I know I don’t have to ask but please do include my best boy in your prayers and positive thoughts.
Happily I can say that Aleksei is great! Look at him now …
And then there is our Jerzy Girl …
Thank you for your private messages enquiring about the results of Aleksei’s scans. I have neglected to update as of yet because it pains me to type these words out … but also hate the thought of keeping everyone wondering.
Aleksei’s MRI results indicate a new enhancing nodule in the spinal cord at the level of S2 which is just below where the original tumour was. Thankfully his chest is clear.
We discussed the possibilities of this being something other than a relapse such as inflammation. The plan is to have another MRI done at the end of the month to check for growth. It would be best if it was gone.
It’s 4:30 a.m. and I haven’t slept yet. As I have done so many times before through this blog, my hope is that by sharing my fears my mind and heart can rest, even for just a few hours.