And celebrate we will…

Last week at Jacobs end of treatment scan results, we received 4 wonderful words…. 4 words we hope and pray to continually hear over and over through the years before he reaches the 5 year mark when he can be deemed cancer free -in 2024 when he is 19 years old. Those wonderful 4 words were No Evidence of Disease.

After almost a year of treatment, Jacob is in remission as far as the doctors can tell. While this is so incredibly amazing and assuring to hear, and very worthy of celebrating – it is a subdued celebration. A hesitant and almost sober celebration. But celebrate we will….

Jacobs kidneys are looking great, and have already regained some of their function which means they are healing from the acute injury and beating from each Methotrexate treatment.

Jacobs heart scan looks perfect. He actually has a higher percentage of blood pumping though per beat than typically seen, which will hopefully serve him well as gets older and the chemo begins to show the late term side effects on his heart. Jacob will always be a heart patient now, being followed for the rest of his life as the doxorubicin given almost always causes heart health issues down the road.

Jacobs hearing remains unchanged. Cisplatin tends to effect the high pitch hearing, and many who receive this chemo in the high doses Jacob has been given, end up with hearing aids. As it looks now, he won’t need them at all.

X-rays were also done of Jacobs “little leg.” There are some concerns. While the bones are almost grafted together, all the bones in the leg are showing osteopenia, and the foot showing significant osteopenia. This means the bones are becoming porous – from chemo and lack of use – and he is at high risk for osteoporosis. Bone can sometimes regenerate up until the age of 20, and the only thing we can do is encourage him in his physio and rehabilitation as well as take low dose vitamin D and calcium. Certain high doses of vitamins actually can feed osteosarcoma cells so it’s with caution he will take supplements.

PET scan – as far as the techs could tell, the PET scan is clear, with an area in the colon lighting up – but this is likely due to the gut infection he was currently fighting at the time of the scan.

CT scan – this scan is where some of the hesitant celebration enters in. Jacobs lungs remain clear, which is awesome news as osteosarcoma typically spreads to the lungs as a secondary location. However, there is a new area of concern noted on Jacobs collarbone. The easiest way to explain it is that it looks like there is a bite mark out of the left clavicle, and this is a change from his other CT scans. While the doctors are uncertain at this time what exactly this means, they also cannot rule out that it is not metastatic disease either and will need close monitoring. The reassuring news is the PET scan did not light up in this area. However, Jacob now has to go for scans of his lungs and collarbone every 6 weeks, as opposed to every 3 months -which is the standard protocol.

The reality of Osteosarcoma is harsh – the other reason our celebrating is subdued. The presentation Jacob had initially with the skip lesion ( metastasis in his bone) is not “typical” and is only seen in 1-5% of cases. The fact that his cancer had spread to another area in his leg raises the chance of relapse significantly, and the statistics are beyond unsettling. Bone mets are the “worst possible presentation.”

Yet… Hebrews 6 reminds us – “we who have found safety with Him are greatly encouraged to hold firmly to the hope placed before us. We have this hope as an anchor for our lives. It is safe and sure, and goes through the curtain of the heavenly temple into the inner sanctuary. On our behalf Jesus has gone in there before us and has become a high priest forever.”

Your continued prayers are coveted, as Jacob is rehabilitated, and that we can continue to hear the words “no evidence of disease.”

We go forward in hope, and celebrate we will…..

5 thoughts on “And celebrate we will…”

  1. We are so thankful for all the good news, and will continue keeping Jacob in prayer for those things that are not as we would like them to be, entrusting all these things into the hand of our Father.


  2. Every day is a gift, something that is such a reality in your lives, as it should be for us all. We will continue to keep Jacob and you all in our prayers! Ron and Rose and family


  3. Hello Tracey, I hope it works to send you a message this way. I don’t like to leave a comment at the bottom of your post because I can’t figure out how to make it private. I always read your posts, and know so well what you are expressing. This ‘cautious celebration’ for example; so very true. Many people will think and hope this is over for Jacob, but you and we know the sad reality of this awful disease. So many insecurities when we look to the future; with every ache and pain expressed or noticed we will worry the sarcoma is back. When Caleb clears his throat constantly for hours I wonder if there are lung spots again. When his ankle ‘sprain’ doesn’t heal quickly; I check for lumps that shouldn’t be. We worry. Although the treatment is over for these boys (I hope and pray, forever!) this cancer is never really ‘over’, and something significant was taken from these young men; security, future, carefree years, etc., but I also hope they have been changed in a good way; that they take joy in little things, that family and love and relationships are much more important than stuff, that they are empathetic/kind/patient men, that they don’t waste time on frivolous/foolish things, that they live like each moment is a gift. I am so happy for you and your husband, for Jacob, for your family, that you have come to this point, and hope that you will have a fantastic summer; one without treatments, without hospital stays, and with beaches, camping, water fights and bbq’s. Thanks be to God, that He has blessed the means for Jacob, to this end. All the very best to you and yours, Nellie Van Der Weide



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