tatooedwhtboy Posted December 1, 2011 Posted December 1, 2011 great news.......you mean to tell me my kid isnt the only one that pulls the rug up to make dunes? hahahaha Quote
White Rhino Posted December 1, 2011 Posted December 1, 2011 very very cool and good news!!! I am glad his spirits seem to be intact!!! awesome just awesome!!! Quote
Randog Posted December 4, 2011 Posted December 4, 2011 Very happy to hear Jake's progress. He's a trooper. You guys are all troopers. Quote
andydew Posted December 11, 2011 Author Posted December 11, 2011 Thought about if I should, and what to write @ this point...still uncertain. I'm not trying to pop all the ballons at the party, but here goes an update: We were home 6 days, and Jakers started spiking a fever. With his history, that means mandatory ER stay. We have since been transfered back to LACH. been here a week now, and not certain how long. Docs were perplexed at the lack of reslults from the high strength atibiotics, and are now reconsidering their diagnosis. A CT scan was performed. They found a mass on his liver, and are going to be doing a biopsy on that, another MRI, and a more intrusive biopsy of the femur. Oncology docs once again, ID docs, bone docs, and hematology docs are all consulting about his case. Once again, they are concerned about a malignancy, and are admitting this is very atypical. Jake has a good attitude, but some days hold him back more than others. On a positive note, we were onsite for todays blood drive, and both momma and I donated for our first times today. Britticares Int. hosted the blood drive and Christmas toy drive. Participating in both was a rewarding experience. We talked again with the founders of britticares, who lost their daughter to cancer. We also met their son in the donor room. again...What an AMAZING family!!! Thanks again to all for your kind words. This trial has been a rollercoaster emotionally, but we are still trusting and praying, and amazed at the response of kindness and support from those we know, and those we don't. Quote
FE135 Posted December 11, 2011 Posted December 11, 2011 Positive thoughts your way! Bump in the road for sure. Quote
sandawg Posted December 11, 2011 Posted December 11, 2011 Prayers and good wishes for the little Tyke. Hoping for a good and final posative outcome! Quote
raspadoo Posted December 11, 2011 Posted December 11, 2011 Cant even imagine what you must be going through, roller coaster ride for sure. Family will Pray for Jacob's and your family's strength and for the Dr.'s wisdom, hang in there! Quote
White Rhino Posted December 11, 2011 Posted December 11, 2011 Keeping Jake in our prayers... positive thoughts!!! Quote
rushjunkie Posted December 11, 2011 Posted December 11, 2011 You have my, and my family's, positive thoughts that Jake makes a quick and full recovery. Stay strong! Quote
Randog Posted December 12, 2011 Posted December 12, 2011 Oh Wow Andy, I'm sorry to hear that Jake is still struggling with this. This has got to be so tough for all of you. We will keep praying for him and your family for a full recovery. Please let us know if there is anything we can do to help. R- Quote
Sincity_blondie Posted December 12, 2011 Posted December 12, 2011 Sending thoughts and prayers your way. Praying for strength and health for Jake and strength for the rest of the family. Keep your chin up, children are resiliant and strong. Hopefully the drs will get this under control ASAP and Jake will be home for good soon....... Quote
raspadoo Posted December 24, 2011 Posted December 24, 2011 Keeping Jacob, you and yours in our thoughts and prayers over the holidays... Quote
andydew Posted December 24, 2011 Author Posted December 24, 2011 Quick update: We are still waiting on some biopsy results... My wife sat in another meeting with 20 or so specialists, and they concluded they had never seen this before ; so they had to send the samples to Boston. They decided to dismiss us for the Holidays, until we have an answer. We got home late last night and are unpacking. 43 days in the hospital so far :xmas_cry: , but SOOOO happy to be home. I decided to order my boy one of those wooden playground/ swingsets. It's been delivered, and I'm going to assemble it today for a Christmas surprise . I have a few more tricks too, that I surnamed "operation Christmas playland" for the backyard. I'm gonna go over the top to make this Christmas extra special. "FORT JACOB" should be complete by tonight. Once I get it all landscaped and finished, I'll put some pictures up to share. Jakes knee is enlarged: the left is the size of an orange, and the right is a small grapefruit. Mobility is limited, but with the pain meds, he is walking on it again. We had his hospital room decorated, with a 2' tree, lights, stockings and crap all over the door, and we were expecting to stay, so this was a surpise to us to come home, and consider it a gift from above! Thank you to all, for your prayers and kind words, and may your Christmas be a joyous one that you'll remember forever Quote
Jakster884 Posted December 24, 2011 Posted December 24, 2011 What an awesome DAD and you have an Awesome Son Jacob. He will very excited when he wakes up tomorrow. I wish you and your Family a Merry Christmas and a New Year to look forward too. Quote
rushjunkie Posted December 24, 2011 Posted December 24, 2011 Good to hear that you're in good spirits. No doubt Jacob is benefiting from that. Thanks for the update! I've even had my wife askin how Jacob has been. Have a Merry Christmas brutha! Quote
andydew Posted February 15, 2012 Author Posted February 15, 2012 Got back from another day at CHLA. Met with a couple of the surgeons that worked with Jacob. Thought an update is in order... We have a diagnosis. ..finally...after over a year of pain, and limping; and it sounds like a logical explanation. They are calling his condition a CHRONIC RECURRENT MULTIFOCAL OSTEOMYELITIS. Heres a link if anyone is curious: http://en.wikipedia....l_osteomyelitis It's a very rare disease, that for boys, is one in 6 million...how's that for odds? It is a reassuring diagnosis in that: it isn't fatal, however it can reoccur, and even appear in different areas, but we are celebrating none the less. We are scheduling follow up visits, and routine follow up MRI's, but no more hospital stays! He is prescribed pain meds and anti-inflammatory meds...all oral( no more needles or central IV lines). Not sure how long he'll be on them, but what a relief after the docs, at one point, were talking about possibilities of a prostetic implant, at worse amputaing, and then the assumption of cancer was discussed...what a nightmare this has been emotionally. My first post on this was at a very ruff time for this dad, and although I tried to hold back, and be strong for him, those emotions came out...maybe too much; but thanks to all for the encouragement. Life has a lot of challenges, but there is no pain like watching your child hurting, as some of you know firsthand. We love our little guy so much, and we are so thankful this rollercoaster ride is assumably over. Jacob has been doing well through all of this, and for those that met him at the regatta, you would hardly notice the issue now. He's been on the anti-inflammatories for a month already, and the swelling is down, and other than the occasional incident, he is close to pain free with these meds. After the appointments were done, we visited with a few of his nurses on the oncology floor, and he gave them a valentines teddy bear and a long stem rose He promised one he'd come back and marry her someday(He's 4 btw)... All of this happened yesterday, on Valentine's day, so we feel like God showed us his love for us, in a very special way! We believe this has been an answer to prayer...our prayer...and I just wanted to thank those of you who have prayed for him, wished him well, and to those that asked about him at the regatta. It has meant a lot to my wife and I. Quote
dunefreak Posted February 15, 2012 Posted February 15, 2012 This is such awesome news, Andy. I've very happy for you guys. Jacob is great little guy. After meeting him and watching his antics that Sunday at the north pole, we knew you guys were blessed with such a cool little boy. He is a crackup. Quote
bp-guy Posted February 16, 2012 Posted February 16, 2012 Good news. Kids are so resiliant. He probably handeled the pain better than you did watchin him go through it. Hopefully this will be just a faint memory for you as he grows up and moves on to marrying his nurse in a few years. Quote
dune_rat Posted February 16, 2012 Posted February 16, 2012 great news, thanks for the update on Jacob Quote
White Rhino Posted February 16, 2012 Posted February 16, 2012 Awesome news. I'm so glad they figured it out and no more needles. I couldn't immagine the relief you finally have!! Very happy for you guys!! Quote
Sincity_blondie Posted February 16, 2012 Posted February 16, 2012 YEAAAAAAAAAAAAAAAAAAAAAAAAAAAA! Thats such great news! Quote
Randog Posted February 16, 2012 Posted February 16, 2012 Right on! Thank You God This is great news. Sorry he has had to deal with this, but the avenues that were looked down were scarry. Prayers helped bigtime, and a strong family and caring parents are what caried Jacob through this. Now lets pray there are no more recurrances. And hope he can ween off the meds soon. Congrats Guys. R- Quote
1BADYFZ Posted February 16, 2012 Posted February 16, 2012 Great news, Now you can enjoy some catch up time with eachother and the famiy..Glad to hear that things are looking up for you and your family! Quote
andydew Posted February 17, 2012 Author Posted February 17, 2012 Research has shown us that treatment can last 5-7 years, and some sites say he could struggle with it most of his life, but yes, this is far better than the previously discussed outcomes. We are definatly looking for the opportunities to spend time together, such as our trip to the regatta. I'm sure I missed out on a few of the events, but getting him on his quad all by himself was more rewarding, given the circumstances, anyhow. Also, Jake and I are making this weekend a "boys run" in Glamis for a couple of days. Got a few neighbors going out, and I'm already jonesin bad. Thanks again 1 Quote
Jakster884 Posted February 17, 2012 Posted February 17, 2012 Andy enjoy your weekend out with Jake. I wish the best for him and your Family. Its awesome to hear there is light at the end of the tunnel. I am having with drawls reading about every ones trip out this weekend. Quote
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