It's been 9 weeks today that we lost our beautiful boy. Thank you all for your support. It helped us when I wasn't able to work. Things are still tough. We just go thru the day trying to have normalcy. But we miss him so so so much, every second.
Not sure who's heard and who hasn't. But on July 15th at 6:39 pm. Lucas left us. He was so very sickly. His tumor grew so quickly and fiercely that hiss brain was shifted over. One minute he was up and talking, the next he was sleeping. He didn't wake from his last sleep. They took the tube out and he didn't take another breath. He did wait for everyone to get there miraculously. Then he stopped breathing over the vent and they extubated him. We were all there. Loving him, comforting him, telling him our last secret thoughts for him. Thank you all for supporting us. It's been a long, short year if that makes sense. We're lost and exhausted. We miss him so much already! His viewing is Friday at two at vanlerberghe funeral home in st Clair shores from 2-8 pm. And mass will be held Saturday at 10am, St. Thecla church in Clinton township.
So the chemo has stopped working. We're applying to M.D.Anderson in Boston for a new chemo trial. If we don't get approved, then he's done with those awful drugs. He's spent many, many, nights at the hospital for various illnesses and setbacks. Decisions have to be made. If we're done with the meds, then I want to take him to an island somewhere to spend his time with his family without illness. I'm prepared to walk away from my life and home, to be solely with him, and to love and care for him. Why doesn't God heal him? What's the purpose of talking away a child's future? I'm bitter and angry right now. I'm trying not to give up but the drs seem like they are also. Thanks to everyone for helping us financially thru this. It's been such a burden freed from us at this time. Now all we can do is pray.
One year ago yesterday we brought Lucas to the hospital for headaches. After his cat scan, around two pm, Dr Saad gave me his diagnosis. Medullablastoma. We immediately went to children's where he had many surgeries. I remember this like it was one minute ago... it brings back so much heartache and pain. And that's just for us. I can't imaging what Luke's gone thru. He's so strong and brave. He knows he's sick but still pushes on. He's our warrior, the love of our life! He's so sweet and kind! Thank you all for helping us out thru this. I wouldn't wish it on my worst enemy! We are still fighting! It's a tough battle, and with his cancer spreading, it may be a futile one. But we'll never give up for his sake! And we are so grateful to you all.
Last week's MRI showed improvement on his Brian and spinal column! ! But the lumbar puncture showed there are still cancer cells in his spinal fluid. So next weds is his next chemo admission. :( the chemo has been so rough on his little body! He's had multiple platelet infusions. He's tired, weak and has had the worst cold. But he's still positive and happy for the most part. He was feeling particularly bad this week with joint pains. He asked, "am I ever going to get better? I'm tired of being sick." How do you answer that? I told him of course he will. He misses school, having friends, seeing his cousins, life. He's always busy, playing, always imaginary things. Building machines, having his own store, video games, play dough. Such a trooper, so mature and wise for his age! It's such a pleasure just watching him! So please keep us in your prayers once again this next week. We have to knock these bad cells out!
Thank you all so much for your donations! I haven't had the time to thank each one of you, but we appreciate the help! I hope you know that and understand. My job has been less than understanding. They are looking for ways to get rid of me now. I don't blame them. But I am bitter of their lack of compassion. What would they do if they were in our shoes?
So today we were sent home! We were so excited about it, but didn't realize he had to have nine meds drawn up twice a day, or the negative emotions he'd feel. There's no time to clean up, or time for us, it's a round the clock job! How am I supposed to return to work and expect Mark to get thru this alone?So many decisions to be made, so little experience in doing so.
This is an update I'd never thought I'd be making. On January second, Lucas had his first seizure. We rushed him to the hospital where they intubated him and rushed him to children's in the middle of the snow storm. The next day he had an MRI of his brain which showed his cancer was back. All thru his brain and down his spinal column. A few cells had become chemo resistant and banned together to encase his brain and spine.
The prognosis has dropped from 70 percent to 30. We're still here in the hospital. They've FINALLY been able to control his seizures for the most part. He's eating on his own. But he still cannot speak. He tries, but he cannot make his brain put the words together.
The Dr wants to try two sessions of chemo three weeks apart and then another MRI to see if there's been any progress. If not, it will be comfort measures only. We were half way thru chemo! He was doing great! Such an awful set back.I just don't understand.
Please keep him in your prayers, maybe someone will listen and not take our son from us. I'll try to post when I can.
so here we are in September! it's been five months since Luke's diagnosis. he's doing really well with his chemo! he hates it, hates the pokes, but is pretty healthy all things considered! I hope we continue to get thru this with positive results! it's been very difficult emotionally for me. I cry, a lot! I cry for his pain, I cry for him missing school, I cry mostly for his future health. please God let him lead a somewhat normal, long, happy life! thank you ALL again! for your kind donations and even more for your prayers! God is good! and he's blessed us. with a fantastic son, and hopefully seeing him grow into an exceptional young man.
Lucas is doing very well during his chemo break, gained a couple pounds, eating more often! we have such a long, long way to go with chemo. his blood levels are bottoming out, which is the chemo doing is thing, but scary none the less. he's so open to infections right now! so please everyone, keep the prayers coming! we really need them! xoxoxo
so we finally finished the horrible radiation! ! now we're off till his first chemo admission on July 24th. he will be inpatient for three days every six weeks. due to legal fmla requirements, I have to go back to work full time at that point! these sessions will go on every 4-6weeks for one year. just when we crossed one hurdle, the next big one I'd around the corner! I will just have to commute between McLaren and children's at those times! long road ahead of us!
Sorry I havent updated in so long! Were into week three of radiation/chemo. Its been rough, mentally and physically for all of us! Lucas has been so strong and determined to try to keep his chin up, but he has a very difficult time every day. The mask that he wears for radiation (kind of like a tight spider man mask) keeps him pinned to the table for about 1/2 hr each day. Its very unplesant for him. Chemo is once a week, wednesdays, we're usually at the hospital for at least 5 hrs chemo day. They access his port and give him the injection after we get his weekly labs drawn and the results back to us. This is the hard day. They do put numbing cream on, but he still feels the pressure and it freaks him out. Then after, he's pretty drained and usually sick to his stomach.
He hasnt been able to eat much these days. Lots of sore throats and tummy aches. :( And today we're really noticing his hair falling out. He actually picks it out which makes mom wince!
So, today, due to some weight loss, he had to have another simulation so they can decrease his radiation so as not to over expose him. No treatment today! one good thing!
Thanks to everyone for your continued support and prayers!
Today, unfortunately was a horrible day. Lucas had to get fitted with a cast of his face for his radiation treatments. Honestly its the closest i've been to passing out myself. It was soooo difficult to stay strong for him while he had to wait for this cast to harden. He was crying so hard. But he held still the whole time... he truly lives up to the "strength" at this time. And we LOVE him soooooooooooo. Thanks again for your prayers and generous donations. Every little bit helps at this time. Radiation starts on the 20th and continues, five days a week for six weeks. With chemo injected sporadically. Not sure of that schedule yet.
Wednesday we go to the radiation oncology Dr to find out how often we go for chemo. she told me they give a very large dose of radiation the first time around as a precautionary treatment. this is when he will lose his hair. I don't understand when his results are negative for more tumors that they need to do this! I do know his treatments are expected to last 8 months. just when he's feeling better, hell begins.
We finally got approved for insurance!!! So that leads to this friday, when Lucas will have an MRI of his complete spine (because this type of cancer tends to spread to the spine), a lumbar puncture (for the same reason), and a mediport placement in his chest for his chemotherapy. So it will be a big day and a nail biter for us all. Please keep the prayers coming! This is a huge step for us!
Our son, Lucas, went from headaches to a MedullaBlastoma in a matter of 2 days. Our world has been turned upside down. In a matter of two weeks he's had 3 surgeries so far. The first to place an EVD (temporary shunt) as the headaches were caused by pressure building up in his brain due to the tumor blocking the path to drain his cerebral spinal fluid. The second was the craniotomy to remove the tumor as much as they could. This tumor turned out to be malignant. The third was to place a permanent shunt as his body would not drain the CSF on it's own after the tumor blockage. So now, were waiting to have an MRI, lumbar puncture and mediport placement. Should be this week. This will let us know if this cancer has spread to other parts of his body as this is frequent with this diagnosis.
Obviously i have few words on our feelings. This has been horrifying for both our families.
He was always a healthy kid. He'd actually only been on antibiotics once in his life due to pneumonia. So to get this diagnosis has been mystifying to say the least.
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