My Dear Daughter kept this blog it was titled Joshua's Journey to health I could neaver be so greatfull to her for keeping track of how he suffered and neaver complained. Written by, Chelsea
So, I've decided to do this blog regardless of my fears of what people think and even my fears of writing all this type of information down. Normally, I would say a blog like this is exploitive; but truly I am blogging about this because not only is it important to me, its important to a lot of other people who care about Josh. This blog is intended to help those of you that pray for my brother to pray more specifically.
Before even making this first blog post, I did make sure with Joshua that this is OK with him. These posts are not going to be written to make anyone feel sorry for Josh, or sorry for our family; I do not want that and neither does Josh or the rest of the fam-bam. I believe whole heartedly that this will be a story of triumph in retrospect. Through this process I have realized that there is SO little in Josh's control, and SO little in the doctor's control, that I am trying day by day to put all my hope in Him and trust that the Lord WILL bring my brother back to full health. He was eternaly healed on Febuary 7th 2010 at 4:20 am
Here are some facts from the past about Josh's journey- just so you know where we are at (this briefly skims the surface):
Josh was diagnosed January 28, 2009 when there was a large mass discovered on an x-ray of his chest. The tumor was located between his left lung and chest wall, compressing his left lung. Specifically, it was Testicular Cancer- Germ Cell Tumor. This has a 99% CURE rate. After Joshua had went through several rounds of his tumor markers dropped to normal. Then Joshua went into kidney and liver failure due to dehydration, this delayed the surgery to remove the tumor. Josh finally made it to (what we were told at the time) the last step of his treatment plan, a surgery to remove the tumor from inside his chest, this was done in June. This was an 8-9 hour thoracotomy done by UCLA which ended in a partial upper lobectomy.
After all of this, we were told that the surgery was a success and all the scar tissue was removed. Josh spent 8 days in the hospital recovering from that surgery. Josh went home and began to re cooperate from the hell his body had been put through. In July, we learned that Joshua's cancer was still in his body and the we would need to seek more treatment. In August we went on a wonderful with much of our extended family. When we came home from that cruise, the local oncologist contacted Vicki telling her that Josh needed to be immobilized and that an ambulance was on the way to pick him up.
The cancer had spread to Joshua's liver, shoulder, hip, and spine. The urgency of Josh being immobilized was due to a tumor found on Josh's spine that had completely engulfed his T-7 vertebrae, making it very likely that Josh would become paralyzed with just a tiny movement of that vertebrae-now-tumor. Josh went through back surgery where the surgeons and neurologists were able to go in through Josh's side and remove the tumor from his spine and place a plastic piece instead, basically eliminating the chances of Josh becoming paralyzed. Josh was walking a day after back surgery =)
As we began preparing to move our treatment plan somewhere else (Texas, New York, & other various contenders...) One of the ladies in our local oncologists office tipped my Dad off on Stanford University, noting that they have had success in curing cases very similar to that of Joshua's. This was marvelous because we wouldn't have to be so far away from home! When we first visited Stanford, we met with a doctor in the Lucile Packard Children's Hospital, unfortunately, Joshua was too old at his diagnosis date to be considered for treatment in the Children's Hospital at Stanford but the doctor quickly got on the phone with a colleague of his located in the main Hospital at Stanford, Dr. Srinivas.
We met with Dr. Srinivas the following week. This woman wasted no time, just by looking at Joshua she could tell he was jaundiced. She admitted him to the Hospital after she received his blood work, there was a risk of blood infection and she had to fix it. (side note, there is a count in the blood work and I currently cannot recall its name, but it measures bile in the blood, i'm just gonna call it bile.). There were 10-12 lesions on Josh's liver; these lesions were blocking the bile ducts, disabling his liver to function correctly by excreting the bile into the large intestine to LEAVE the body. Josh's bile was being backed up into his bloodstream creating a huge risk for blood infection that would be able to kill him in a matter of hours. Dr Srinivas immediately began to administer antibiotics to Josh and create a plan to get those bile ducts open so that his liver could begin to function somewhat normally.
Another side note, what was REALLY bothering Josh during all this was his left arm; he was complaining of excruciating pain and would wake up in the middle of the night when pain meds wore off just in absolute pain... what was going on here was the tumor in his left shoulder was causing all kinds of ruckus in his arm. The Pain Management Team at Stanford opted to radiate Josh's shoulder, telling him that he should see absolute relief in a matter of weeks.
Back to the liver- G.I. (Interventional Gastroenterology) was able to come in and place a stent in his liver to alleviate the pressure from Josh's billiary tree (BILLIRUBIN! AHA! THATS WHAT THAT COUNT IS CALLED!!!) Joshua safely made it through! He did not have a blood infection and the bile began to leave his body through normal means =)
Then Dr Srinivas told us her plan. Her plan was to give Josh a chemotherapy that she titled "gentle" chemotherapy. She said that this chemotherapy would actually make Joshua FEEL better, it would cause the tumors in his body to shrink as not to disturb the normal functioning of his body. She said we would do 4 rounds of this gentle chemotherapy, then we would receive two rounds of what she called the hard core chemotherapy and then we would go see the Bone Marrow Transplant Team to receive Josh's cure.
While receiving his gentle chemotherapy treatments, Josh's leg (i think right leg, but i cant really remember right now) began to swell. Then his whole body began to swell up.. they did an ultrasound of his leg and found a blood clot reaching from his calf to his mid abdomen. This would require a stay at the hospital to take a catheter and reach into the vein through Josh's ankle to administer a clot busting medication directly to the clot itself. The high risk with any blood clot is that if part of it breaks off, it could cause major problems (even death) if it reaches the heart or lungs. Josh had to stay laying flat for a few days while this catheter stayed inside of him.
Once the blood clot issue was resolved we continued with the gentle chemotherapy. Then it came time for the hardcore chemo... We arrived Wed and intended to begin this round of chemo on that day, however, it did not go as planned. As the three of us (Dad, Josh, and myself) stepped outside the hospital to get some fresh air with our coffees in hand- Josh went to step off the curb and his jeans stifled his step landing him face first on the pavement in front of the hospital. He wound up if the emergency room and left with 4 stitches. We didn't begin the chemo until the following day.
This chemo took about 8 hours to administer and was administered over 5 consecutive days. It didn't have as many negative physical side effect repercussions, as it did mental. One of the 3 different chemos they give him is called ifosfamide, this particular chemical made Josh super loopy- at one point it was 3 AM and I awoke to Josh opening the sliding glass door of our apartment where he was intending to urinate on the back patio. But Josh quickly bounced back once the toxins left his body. I find it incredible how many times Josh has surpassed doctors expectations and how quickly Josh recovers, no, i find it divine.
Josh had 3 weeks off after this and then we went back for our next dose of the 5 day course... But one thing that had been haunting Josh is the lack of ability to use his left arm still, by this point it had been about 2.5 months since the radiation. Dr Srinivas looked at Josh's arm and said that it looked as though it was pulled out of socket and she pointed out how it didn't look at all similar to his right arm, so she ordered an x-ray of his left arm and come to find out... Josh has been walking around with a broken arm for the past few weeks! She felt so awful that she didn't notice before, but Josh must have bumped his arm while it was healing and it must have snapped then. She ordered that Josh just receive the gentle chemotherapy instead of the hard core stuff while they figure out what to do with his arm.
Since we made plans to see the BMT (Bone Marrow Transplant) Doctor on Friday December the 18th, Josh decided to wait on what needed to be done on his arm so that we don't lose progress on seeking our cure.
And that where we are now... We have met with the BMT Team and they are yet to say if Josh is a valid candidate for a BMT. He has to go through 3 test to make sure his body is capable of handling the rigor that is their "heavy duty chemo". A heart function test, a pulmonary function test, and an MRI. The pulmonary function test is the one we are most concerned about since the partial upper lobectomy and just the overall health of Josh's lungs. Dr Johnathan Benjamin is the man we met with and this is what I gathered from out consultation with him:
Assuming that Josh is a valid candidate for the BMT, this is how the procedure will go. First, they will administer a chemo and give Josh neupogen (a marrow stimulant) injections for 2 weeks after the chemo is administered- this is what they call "mobilization". Then they will draw blood from Josh and be able to "harvest" marrow from his blood rather than doing it the old-fashioned way and making punctures into the back of his hip bones to get the marrow. Once they have the marrow, they will freeze it and save it for later. Then, they will have Josh in the hospital where they will administer a chemo that is 5 times more stronger than any other chemo he has had before. This chemo will wipe him out and he will be on infusions and nutritional IV's to supplement his body. Then they will send what is called, "the rescue"; this is when they give Josh back his bone marrow that they had harvested at an earlier date, this will literally bring Josh back to life.
This will require a minimum hospital stay of 4 weeks... What saddens our family is that they do not allow overnight guests in the Blood and Marrow Transplant Unit- Josh has never had to stay in the hospital overnight alone, he has always had someone with him...
So heres what I'll be praying for, and you can too:
Josh does EXCEPTIONALLY well on his function tests, and that he is accepted and looked at as a very promising candidate for the Bone Marrow Transplant. Also, that Josh has a really really great Christmas and finds encouragement, as many of his friends have fallen by the wayside during this whole journey.
One other thing, is that the Devil no longer lies to him by making him feel like he is a burden to this family.. Thats one thing that Josh has expressed to me and it make me so mad that the Devil is on his heels like that. God Bless my Wonderfull Daughter for writing this.
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Don't worry about that OWL.... I have heard that also and it is a wives tale so don't let it spook you. You are not growing hard.. It is just nothing can hurt worse than losing a child our emotions are too wrapped up in that pain. I told my sister that this pain we are feeling could not possibly get worse, there is nothing lower or able to take presidence over it. 29 years is a long life for a horse, it was just time. Take care of youself today and don't let these things enter your mind. My pastor said "Doubt is like a telemarketer...Just don't pick up the phone." Easier said than done right!
Hugs and Blessing Aways, Shannon
We send our love to you. We believe our son is healing in a higher place and we will rejoin him in time. We feel Richie with us and this helps us get in with life and love. Don't get me wrong, we still break down in tears regularly, but our faith and belief sustains us. You have more good work to do! Love, Jean and Rich
I just read your post on the main page and boy did you write how I was feeling and really still am the whole first year. Still to this day (14 months later) I wake up to his pictures by my computer and just cannot believe I will not touch him again. My son also left suddenly so we were spared any suffering as with your young son. I am sorry he and your family had to endure such suffering.
But I am also glad you are finding some joy in life with your other children and their family. We have 4 grand children and I know they have saved us throughout this year and keeping us on a path of healing and trying to make the best of what is left of our lives on earth.
I am just so thankful to have found this website and can read something like you wrote and know the exact feelings you expressed. Thank you Laurie for being a part of this wonderful group.
In heaven the concept of time is gone. It must have been an eternity of hell on earth. Paradise or heaven is where we all aim to dwell.
I had a tragic sudden horrific end to my 22 year old daughter, Allison's passing from her earthly body:Perhaps now they can live behind the veil in paradise. I pray that their souls are in eternal bliss.
Oh Laurie - my heart just bleeds for you. My son passed suddenly, and we were spared that living hell that you must have endured for all those months. I send you my prayers and (((((hugs))))))
Hi Laurie - My only child Tyler, age 24, passed on January 26, 2010. Yesterday was my first DOD. I actually felt almost relieved that an entire year of 'firsts' was over. Now I just have year after year of emptiness and sorrow to face. I agonize over the trial your family and Josh had to endure. How old was he when he was diagnosed? I DO know beyond the shadow of a doubt that Tyler is with me all the time and I am certain Josh is with you as well