Jacob has now completed round 14. Four left to go, which should hopefully be completed by the end of April. Chemo was delayed again because Jacobs counts took an extra 9 days to come in, but overall he is doing well. The chemo kicks the crap out of him over and over, but somehow he manages to come out of the round showing his beautiful big smile. This last round was no exception. The methotrexate is so tough on his kidneys, and the allergic reactions persist until the last bit has cleared from his system. Jacob slept for the first 4 days straight, stops eating and drinking and communicating, and developed mouth sores almost as soon as the chemo begins to drip in his body. This round took 8 days to clear… he’s a turtle in his clearing skills, but we remain patient as he’s hyper hydrated and pumped full of rescue meds every 3 hours until his body can get rid of it. The reason he is taking much longer than the average kid to clear the MTX is because his kidneys continue to have a hard time processing the drugs. This does worry us for his kidney health down the road, as they get injured over and over, but for now we have no choice but to focus on today, on his health now and fighting this beast….and “worry” about the future another day. He is under close observation, however, and at any point the doctors could decide now to discontinue treatment for the sake of his kidneys.
Leaving the home only becomes more difficult with time. We are in month 9 now, and 165 nights spent in hospital. This is weighing very heavily on the kids, especially Evan and Noah. There is no “getting used to it” for them. They want normal, they want things back to the way they were. Noah has expressed this several different ways recently, saying he wants to move back to the old house – back when life was better, back when Jacob didn’t lose his leg. It pains me to see his small young brain having to process such huge things, and I know once the chemo portion of this journey is over, there will be many things to work through and start processing with the boys.
The prosthetic leg is well under way, and we hope to have a working first model leg for Jacob to trial as soon as after the next round of chemo! He may actually be able to take a couple steps, which would be his first time “walking” since June! The folks at Barber Prosthetics are so lovely to work with, and you can tell they care about Jacobs well being.
Jacob was recently referred to GF Strong for rehab. We do not know much yet about how that end of things will look, but we should have an initial consult soon to learn more.
As some of you have seen, Jacobs story has been getting a fair amount of attention from media in the last week. I will copy a post I put on my social media so I don’t have to rewrite it.
In the last week, Jacobs story has been run by various large news organizations internationally. While we are thankful for a platform to spread some awareness about rotationplasty in order to help people become more informed about why his leg and foot are backwards, increase awareness about the lack of funding worldwide for childhood cancers, and hopefully inspire and encourage others in their own struggles, I am discouraged by the fact that the mention of “God” or “faith” or “prayers” keeps getting cut out from the interviews. Caters News, the original reporter on Jacob, allowed it to be added in the story that Jacob “trusts Gods plan for his life”. The others news agencies who bought and shared the story have taken that line out. People magazine allowed the word “faith” and “church community” under my request that it be in there, but took out the word “God”. There has been no pushing or an agenda or anything religious, apart from wanting people to know that Jacob and our entire family is not doing this in our own strength, not with just a positive attitude or good vibes from those around us. Next week we have some interviews with the UK Press, and I will again try get them to at least mention it, as it’s a huge part of Jacobs “story”. It’s incredibly sad to live in a world where “God” becomes a taboo thing to even mention.
Amazingly enough, within an hour of posting this, I was contacted by a person who works for some of the larger UK press organizations (BBC, Telegraph, Guardian) saying she was willing to work with me and guarantee to get better press coverage in the UK than the USA had given regarding our faith in God.
Here are some links to the recent articles and interviews
For now, we have a couple days at home before we head back for the next round already come Monday. That will be followed by a 10 day “break” however most of those days are already filled with appointments in Vancouver. March 15-17 Ray, Jacob, and I are attending a Champs ( Children’s version of War Amps) conference. Jacob will get to meet other amputees, as well as we will all attend classes to learn more about living with an amputation and a prosthetic.
Again, many thanks for the continued prayer and support in various ways. Whether the media will share it or not, we are held up by an Amazing Father who gives us peace beyond all understanding on this impossibly difficult road we are traveling.