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Wednesday, July 1, 2009 7:54 PM CDT
Jonathon graduated to survivor's clinic at Stanford in May! His 5th year scans were cancer-free! We are so blessed that he has reached this important milestone.
This year, Jonathon turned 7 and finished the first grade. He is doing so fantastic!!!
Friday, March 16, 2007
Hi everyone!
For all of those of you that continue to check in on Jonathon, we are happy to report that all of Jonathon's 3-year scans were clear!!
This is a big turning point for all of us. Jonathon will no longer endure scans with anesthesia and only needs to have bloodwork and a CT scan every 6 months. The doctors will continue to monitor things closely, but what a great feeling it is to know that Jonathon is doing so well.
Thank you for all of your continued prayers along the way. We are so blessed to have this boy.
Annie
Sunday, April 2, 2006 9:29 PM CDT
We are thrilled to say that Jonathon's 2-year scans were completely clear! According to Jonathon's oncologist, relapses that occur after the second year are much more rare. We are so relieved and so happy that Jonathon is continuing to do well in remission. We know that one day we will say with 100 percent confidence that he has been CURED.
It's been a learning curve during the last two years--trying to decipher what's just normal kid stuff and what is something to be concerned about. Little by litte, we are trying to move on with our lives and return to some level of life that feels normal again.
Jonathon continues to be a busy, busy almost 4-year old! He's learning many new things in preschool. He now writes his name, knows many letters of the alphabet, counts almost to 20 and amazes us with his understanding. Sometimes we just can't help but to chuckle out loud at the things he says!
Last night, we watched video of him that was taken in Hawaii several months after he finished therapy. We couldn't believe how much he has grown up. It reminded us of just how much of a little baby he was when he went through his cancer treatment.
Jonathon's scars still remind us not to ever turn our back on this disease, but we truly do feel God has blessed Jonathon with a cure and with health. We sure don't take health for granted anymore.
Please keep Jonathon in your prayers and all other kids (and families) facing this disease.
The Hydorns
Monday, January 9, 2006 1:08 PM CST
Jonathon had a wonderful Christmas at Disneyland and spending time with his cousins. We're back in school and at work and getting settled back into routine after our trip.
Jonathon's next scans will be in March at which point Jonathon will have reached 2 years past his chemotherapy treatment and 2 years in remission. We will surely breathe a big sigh of relief when we cross that line.
Saturday, November 12, 2005 9:02 PM CST
It's been a terribly long time since our last update! Jonathon is doing absolutely WONDERFUL. He's a thriving 3 year old boy!
Jonathon had his last scans in September and will have some again in December. We had a scare in September when his bone scan came back "inconclusive." The nuclear medicine radiologist said his bone scan was showing some "hot spots" in his shoulder blades in the growth plates. Our oncologist tried to reassure us that it was probably related to growth activity, but it nonetheless sent us spinning for several hours while we had some follow-up tests done. Everything came back NORMAL and we were totally relieved. We've been assured that it is not uncommon that results can come back inconclusive as more and more tests are taken and the doctors have more prior tests to look at and compare them to.
Other than than, Jonathon is blossoming. He loves pre-school and has many friends that he plays with every day. Mommy recently went part-time so our quality of life as a family has improved immensely. We're all happier and the balance is much better. When anyone you love faces a serious illness, every day you have with them becomes precious. Even when they're not sick anymore, you never forget the precious time and how fragile it all can be. I'm so happy to be spending the quality time with Jonathon so that I can watch him learn and grow. He's so happy when I come to school and he can show me all that he experiences every day. Greg and I can't believe how grown up he has become!!
We recently looked back at our journal here and some of the pictures that we took while Jonathon was sick. It all seems like a nightmare now and we can't believe that the beautiful, healthy boy we watch every day was the very ill boy we see in the pictures. We are SO PROUD and SO FORTUNATE that he is healthy today and we pray constantly (every night together) that that will never change.
Jonathon still loves trains and he has a huge imagination when he plays. It's great fun to watch. Now that I have a little bit more time, I will try and keep this site updated a bit more often.
Check out the new pictures on our Hydorn family website!
Hope you are all doing well!
Annie
Friday, March 25, 2005 11:21 AM CST
GOOD NEWS! Jonathon's scans were completely clear! What a wonderful Easter gift for our family to know that Jonathon is healthy and strong. We are so grateful.
Jonathon is such an amazing kid. He did so well through his procedures. The hardest parts were getting his IV (in and out) and yesterday he had to have the NG tube for the contrast solution he wouldn't drink (I can't blame him...I tasted it and it WAS awful). Other than that, Jonathon recovered well. Last night, we went out to dinner and just let Jonathon eat whatever he wanted! I'm sure the doctors wouldn't love that after his anesthesia, but he was SO hungry. We had delays in his procedures and Jonathon ended up going almost 24 hours without anything to eat or drink. That's a lot for a little guy.
All that's left now is a test on Jonathon's heart and a follow up appointment with his oncologist.
Today, we count our blessings.
Anne
Monday, March 14, 2005 9:35 PM CST
Jonathon will once again be going in for scans. We just surpassed Jonathon's one year anniversary post-chemo! Beginning March 21, Jonathon will have a skeletal survey (an xray of each bone), a bone scan, a CT of the chest and abdomen, a brain MRI and a heart echo.
Please, please, if you're reading this, pray for Jonathon to have all clear results and pray for his safety during anesthesia.
Hope you are all doing well!
UPDATE: MARCH 21, 2005
Jonathon's bone scan was clear. It was a long day, but only good news to report today. On Thurs., he will have the skeletal survery, CT, and MRI.
Tuesday, December 21, 2004
As the doctor said, "only good news and good news to report." Both of Jonathon's scans came back normal and his blood counts looked "beautiful." That's music to our ears!! We pray those results will be the only results we EVER hear.
Jonathon was SO BRAVE during his tests. He had a hard time with his blood draw and ended up having to be "stuck" twice, but once that was over he was perfectly content as long as he knew there would be no more "owies."
He did better than mommy this go around! Ah well...we made it through the day.
Merry Christmas to our friends and loved ones! God bless.
The Hydorns
Saturday, December 11, 2004 5:27 PM CST
Jonathon is doing well. His checkup scans are due again. We go in on Dec. 20th for an abdominal ultrasound and chest x-ray. We get nervous, but continue to pray every day for his continued health.
Jonathon is now talking a lot and he's making lots of new friends at school. Today, Jonathon was in his first Christmas Pageant. He sang "Feliz Navidad" with his school class on stage. Well, I should say he cried the entire time, but we were super proud anyway. It's pretty overwhelming for the little ones, but they're so cute up there. It was a lot of fun.
We send our wishes for a warm and peaceful holiday. We'll update on the 20th after we have results. Please say prayers. I don't think those tests will ever feel easy.
Please also say prayers for Ben Mager, another little boy who just relapsed with CCSK. He's now undergoing very rigorous chemo again. He needs our constant prayer and support so that he will again be declared in remission.
The Hydorns
Saturday, October 30, 2004 10:47 AM CDT
I can't believe it's Halloween again! Doesn't seem that long ago that Jonathon was still undergoing treatment. Jonathon is going to be a pirate this year! I know I need to post new pictures...way behind on that one.
Jonathon is doing excellent!!!! Mommy and daddy are back at work now and Jonathon started school, which he loves. We found a wonderful school for him. We're all adjusting to a new routine once again, but this time it's trying to settle into a regular family routine. It's good.
Jonathon recently went back to his pediatrician and got all of his immunizations caught up (he missed several during his chemotherapy). He was also eligible for a flu shot, which the doctor gave to him. We found out when we went back that his pediatrican also had a battle with cancer this past year. So, he has a special empathy for Jonathon. It's weird how life brings you down certain pathways, isn't it?
The pediatrician really wanted to assess Jonathon's developmental level because sometimes the chemo can have an effect on cognitive skills. So, I have to tell you what Jonathon did that blew Greg and I away. The doctor asked Jonathon, "If I have one apple Jonathon, and you give me another apple, how many apples do I have?" Jonathon promptly held up 2 fingers and shouted "twooooo!" He added!!!! The doctor laughed and said that was a four-year old level. I think I turned about 10 shades of red because I was so shocked. Needless to say, after talking with Jonathon for quite some time, his pediatrician concluded that Jonathon is right where he should be verbally and that he's a very intelligent, well-adjusted and advanced child. THAT was music to our ears!!!! So, that's my mommy boast for the day.
Thank you to all of you who continue to read Jonathon's website. I hope over the next year, it's more filled with Jonathon growing up than about doctor's visits and tests. Jonathon does not go back for more scans until January. That's a nice break for him.
Love to all,
Annie
Friday, October 1, 2004 10:34 PM CDT
Only good news today.....Jonathon's bone scan was also CLEAR. That means Jonathon is being blessed with continuing remission and we now have more than 2 months before any more scans or tests.
Today was a little rough on Jonathon. He got his second real IV put in and he screamed quite a bit. But, as always, Jonathon recovers quickly and by 20 minutes later, he had forgotten the fact that his little arm had a mini "cast" on it to keep the IV in place. It didn't stop him any...for the entire 5 hours he had it.
Because he now is beginning to verbalize and express himself, we realize how much Jonathon absorbs about his experiences at Stanford. The minute we drove up to Stanford he said, "Mama, no ow." He remembered the "owie" of getting the NG tube put into his nose and throat last time. I couldn't really respond to it and reassure him that there would be no "owies" because I knew he had a poke coming. For the rest of the day, though, after the IV was put in, we could reassure him that the "owies" were over for the day.
He got pretty stressed out when we finally got into the bone scan. There is a lot of very big machinery in the nuclear medicine room and many doctors and technicians. I think he felt very overwhelmed and frightened. He started crying and sweating and reaching out for me. I held him while they began to administer the anesthesia and just stroked his head to keep him calm. He quickly went into a sort of catatonic state. It was kind of creepy. They used some new medications today. Overall, we think the new medications created a more peaceful experience for Jonathon as he came out of the anesthesia very easily (sometimes he comes out in a highly agitated state which is very difficult). However, the experience for the two of us was more stressful to watch at first. I left the room crying and once the flood gates were open, that was that. There is no way to feel easy when you watch your child go under anesthesia.
I think I've mentioned before that I always cry on these days of scans and follow ups. At some point, the stress and anxiety gets to me and I lose it. Again today, like an angel sent her, Jonathon's oncologist just happened to walk by the area we were waiting in for Jonathon to finish his scan. To explain why I think this like I have a guardian angel watching over me... I have never run into Jonathon's oncologist in the hospital by chance in the entire year we were being treated there. Then, the last two times Jonathon was having a scan and right about the time I was falling apart, here she comes. She goes right in, finds out the results of the scan and gives us the relief and piece of mind we're waiting for...Jonathon's FINE...no...he's doing GREAT.
Today, we feel blessed. These experiences, as hard as they are, remind us of how meaningful life is and how precious our loved ones are in our lives. Today we saw a lot of kids going in for some major surgeries...life saving and potentially life changing...lots of tears, but also lots of laughter and hugs. Life is amazing...I took so much for granted before Jonathon got sick. No matter what, I'll always appreciate the life that God has granted me and the preciousness of my child. He has taught me lessons I cannot describe.
We are happy tonight. We danced with Jonathon and we sung our hearts out in the car with him. We have much to celebrate.
Thursday, September 30, 2004 10:23 PM CDT
Jonathon will have his bone scan tomorrow as long as the cold he has doesn't prevent him from undergoing anesthesia. As always, please pray for Jonathon's ongoing remission.
We'll update as soon as we can with the results.
God bless.
Friday, September 10, 2004 9:10 AM CDT
Jonathon's bone scan is going to be rescheduled for the end of September. Unfortunately, we have all been sick with the stomach flu and could not make it to Stanford as a result. We know in our hearts that Jonathon is fine, but we will have to wait a couple of more weeks for the medical technology to confirm it!
In the meantime, we are beginning to recover from being so sick and are getting ready to take Jonathon on his first real vacation. We are very excited. Jonathon makes airplane sounds and then shouts "beach!!" He's going to have the best time in Hawaii. We all are. This is the most well-deserved time we can imagine having as a family.
We will update when we have the results from the scans.
Tuesday, September 7, 2004 11:45 PM CDT
Jonathon's chest and abdominal CT are CLLEAAARRRRR!!!!!! Praise God for answering our prayers. We still have the bone scan on Thursday, but another big milestone is met. We were so relieved and so thankful to God that Jonathon's scans today showed no return of any cancer.
We saw so many of our favorite doctors and nurses at Stanford today. God was watching out for us...just when we needed it most, we ran into Jonathon's two doctors (at separate times). Dr. Twist came out of the elevator just as Jonathon began his CT scan, saw me agonizing over the wait and went straight in to find out the results. She came out with all smiles and a thumb up and I just gave her the hugest hug ever and felt total relief. Waiting for the results is absolutely agonizing. I usually end up in tears every time because the stress at some point just overwhelms me.
We all had a VERY long day with lots of ups and downs, but the biggest news is that Jonathon's results were great. We said a lot of thankful prayers today. One more big test to go on Thursday. I'll post the results as soon as I can...please say prayers for Jonathon for safe anesthesia and NO SIGNS OF RELAPSE.
Tuesday, September 7, 2004 11:00 AM CDT
Jonathon is undergoing anesthesia today for his abdominal CT scan. Please say prayers for his continuing remission and for a safe procedure today. His bone scan will be Thursday.
Wednesday, August 25, 2004 9:51 AM CDT
Jonathon had his monthly checkup on Monday. His counts are now back up into the very normal range. Both his primary oncologist and his fellow oncologist prodded his tummy thoroughly and checked him over completely. They both said he just looks fantastic and were chuckling at his bounds of energy! While they examined him, Jonathon laid completely still and fully cooperated!! We were so proud of him. To us it's an indication of just how much trust this little boy has in these two wonderful doctors. It's great to hear that he's doing well in the opinion of the doctors. He only has one more week on his antibiotics (prevents him from getting very bad strains of pneumonia that immunosuppression can make him susceptible to) and then Jonathon is off all medication.
The next big scans are scheduled for September 9th. Jonathon will undergo anesthesia once again for the CTs of his chest and abdomen (probably will also have to have the NG tube for the oral contrast, which he will never drink on his own) and the bone scan. Please say lots of prayers for Jonathon's continued remission.
On the more fun side, Jonathon went swimming in the big pool yesterday for the first time and had an absolute blast. He got braver and braver as the time went on and walked all the way into the pool by himself up to his neck. We were delighted by his quick progress! He goes back today and tomorrow for more fun swimming and continues to take his gymnastics classes. He loves to "jump" on the trampoline and swing on the bars.
In one more week Jonathon gets to play with his cousins Bayley and Adyson for the first time since he was sick and then one week after that Jonathon will get to take his first airplane ride to Hawaii. This time with him has been precious for all of us.
Sunday, August 8, 2004
Hi to everyone who still checks in to see how Jonathon is doing. Sorry for the LONG time in between updates! Now that the bar exam is over, I will continue to update more frequently. I'm trying to take some new pictures, too, so I can update the photos. Jonathon's hair is all grown in now--still blond as ever.
Jonathon continues to do very well. He still goes to Stanford every month for blood work and a check up with his oncologist. He has to get a "poke" now because he no longer has the central line, but Jonathon only screams for a minute or two and then it's back to playing!
Jonathon is still taking antibiotics through the month of August. He needs to continue taking them until he's 6 months past chemotherapy, which we're quickly approaching. He takes them because it takes approximately 6 months before the entire immune system has recovered from the chemo.
Early in September, Jonathon will be undergoing anesthesia again for some big scans--a CT of the chest and abdomen and a bone scan. We get nervous as those days get closer because we just can't imagine our lives taking any more hits than they already have this past year. But, we are very faithful and believe that God has a very special plan for our baby boy. We feel confident that Jonathon will remain in remission and one day we're going to hear the words "he's cured."
Jonathon is trying hard to talk and says all kinds of things that we spend much of the day trying to figure out, but he's improving all of the time. He plays outside in his pool and sandbox for hours. We visit the zoo and play in the park. Jonathon just started gymnastics classes and will soon start swimming lessons. He's having a GREAT summer. It's been a wonderful change from the constant hospital stays of last year.
It's a strange feeling around this time because we're coming up on the one year anniversary of Jonathon's diagnosis. Also, at this time last year is when Jonathon really began becoming symptomatic of having cancer. It feels a bit eerie--very bad memories.
We continue to be SO grateful for Jonathon's health. He's so energetic--he keeps us on our toes!!
Friday, July 2, 2004
Sorry it's been such a long time between updates, but that's only because Jonathon is doing so well and everything is going great!
Jonathon is your typical crazy little 2 year old! He's really doing wonderfully and we just keep saying prayers each night that God will continue to protect him and keep him healthy.
We're trying to put our lives back together and figuring out what a normal life is these days. Most importantly, we're together as a family. We are more than appreciative of each other and never take any day for granted--especially a day with Jonathon.
Greg and I both gave blood samples and became part of the national bone marrow registry. We both felt that there was no way we couldn't join. One of the parents of a child receiving a bone marrow transplant at Lucile Packard was instrumental in bringing the bone marrow drive to our area. I think I've mentioned before that I never gave blood before or even considered how important it was to others until I watched my own son receive transfusion after transfusion. If I could encourage anyone reading this to join in next time they see a bone marrow drive in their area, please do so. Some of these kids (and of course, adults, too) wait and wait for a donor. I could only imagine the joy I would feel in being a match for someone--to save a life. I could just imagine if that life were Jonathon's--how eternally grateful I would be to that person. Anyway, just some food for thought!
Please say some prayers for Petyon White and her family. Little Peyton is finishing her treatment for CCSK in the very near future. It's a wonderful time when you finally finish that long and scary and tiring journey, but it can also be (in a weird way) anxiety provoking once the treatment stops. Please pray for Peyton and her family, especially that Peyton remains cancer free forever.
Also, I'm training to walk the Breast Cancer 3-day here in San Francisco! Unfortunately, cancer has touched my life way too many times since I was young. I would love to witness the day that a cure for this awful disease is found. Anyone that would like to visit my webpage and make a donation to support me for the walk can do so at www.the3day.org. My goal is to raise at least $2000 for the fight against breast cancer and I will be walking 60 miles over 3 days. All the proceeds go to the Susan G. Komen Breast Cancer Foundation. My mom and I are both registered to participate! I'm really excited to be involved in this.
Hope you all are doing well. Of course, I still haven't updated the pictures. The Bar exam is sitting around the corner--so maybe in August?? [Smiles].
Thursday, June 10, 2004
The good news we received today felt like another leap over a big hurdle--Jonathon's abdominal ultrasound and chest x-ray were CLEAR!
We felt so relieved. After leaving Stanford, we took Jonathon out for dinner where he had his favorite food--grilled cheese and french fries. Then he had a big scoop of creamy vanilla bean ice cream. It may seem strange, but it was Jonathon's first bowl of ice cream and a well deserved one today!
Before his chemo started he was too little for things like that and it's only been in the last 2 months that Jonathon's taste buds have returned to normal such that he's willing to try new foods. From what we are told, nothing tastes right or good during chemotherapy. Anyway, we had an absolute ball watching him eat and enjoy this ice cream. It was hilarious and people around us were cracking up, too. Jonathon can be quite a lively and entertaining boy--he makes us laugh all of the time.
Needless to say, we said great big prayers of gratitude today that Jonathon continues to be cancer free. There's no way to describe the relief that comes when you hear the doctor's words that everyone looks fine. It makes everything else in life seem completely insignificant.
God bless all of you...today was a good day.
Monday, June 7, 2004
Please say some extra prayers this week...Jonathon goes back in for his first checkup scans on Thursday. The nervousness is starting to rise up in us again. We know it's normal to feel this way...we just don't want the world to come crashing in on us again.
Much love to all that continue to keep Jonathon safe with prayers.
Monday, May 24, 2004
Jonathon continues to do wonderfully. You can see by his new picture that he looks much healthier now and he's starting to grow in lots of hair.
Jonathon had a regular blood draw last week when he had a visit at Stanford for a checkup. His counts are almost all back in the normal range, except for his white cells which are still only at about 3000. He'll continue to be on antibiotics through August since his immune system will be somewhat depressed through about that time.
Other than that, he's doing very well. He goes back June 10th for his first set of checkup scans. His oncologist continues to assure us that Jonathon's prognosis for the long term should be very good and we continue our strong prayers every day for his continued health and recovery.
Jonathon turns two on Wednesday. It's hard to believe what he went through (what we all went through) during his second year of life. He's our miracle and our angel. He's a very special, special boy.
I'm still trying to update the pictures! Sometime soon, I promise.
Tuesday, May 11, 2004
Jonathon is continuing to improve every day in his appearance. His color is back and he now has much more blond hair. It looks like he has a really short haircut--people still comment on his lack of hair now and again, but I just smile and think to myself "you have no idea what he went through to get that great haircut of his!" We didn't realize just how astronomically hard the therapy was on his body until now as we see him getting better and looking more like his little Jonathon self. Even his teeth are now bright and white again.
We often still get the heeby-jeeby scares, but I am told that is very normal and that it will continue for sometime. As Jonathon's little boy personality unfolds and develops, it becomes even more unimaginable that he could ever become sick again. I don't want to even go there because we are remaining faithful that Jonathon is cured.
Jonathon had an absolute BLAST at Disneyland--what a trooper he was! He loved the parade and all of the characters the most. I will be updating the pictures as soon as I get them back from the developer--we didn't take too many digitals this time.
We are getting ready to celebrate Jonathon's second birthday this weekend. I can't believe he's turning 2! Of course, the theme is trains--what else could it possibly be? His party will be about everything he loves.
Monday, April 26, 2004
Jonathon continues to do well. He now looks like he has a very short "buzz" cut. His hair is growing in and it's so strange to see him with hair! His eyelashes are getting nice and long and he has blond eyebrows. He looks SO much better. We didn't realize really the extent of the therapy on his appearance until recently when we see him looking so much more healthy. It's WONDERFUL.
Jonathon got to see his extended family again for the first time this past Sunday when he attended his Great Grandma's 90th birthday party. He had a blast and a very full day!
We are all headed off to Disneyland tomorrow for Jonathon's first trip to the park. We don't take time for granted anymore! We are all very excited and we know that Jonathon will LOVE the choo-choos they have there. If we do that first we might not see anything else all day! We are also making a visit to Uncle Matt and Aunt Roxanne's house in Palm Springs. Jonathon will get to play with his cousins again for the first time since last year!
When we get back, we'll post some new pictures.
Monday, April 12, 2004
Jonathon's central line has now been out for a week and it has been GREAT. He has been able to experience so many new things that many kids his age were able to experience months ago. We went to the zoo and Jonathon rode a "choo choo" for the first time. As much as he liked the animals, he LOVED the train and every time he heard the whistle at the zoo he shouted "choo choo!!" We had such a wonderful day.
Jonathon is now back playing in the park, going on the slides, swimming in his little pool, playing in the dirt, taking normal big boy baths, and just having an all around good time. All he has left from last week's surgery is a Mickey Mouse band-aid over a small incision that's healing very nicely. His abdominal scar is looking better all the time. It's of course noticeable when he's not wearing a shirt, but it's a very fine, light scar which we are very pleased with. He has a few little tatoos on his belly, too, from the radiation, but we'll see if those can be removed at some later date.
Jonathon's counts are SLOWLY recovering. He'll go back to visit his oncologist in May and get labwork. This time, he'll have to get a poke to draw blood, but the 15 minutes of tears will be worth the freedom he has without the central line. June will be his first 3-month post-therapy scans. I'm sure we'll be on pins and needles, but we'll just be praying that the cancer is gone forever.
Please go see our friend Peyton's website...Peyton is a beautiful little girl who is also battling CCSK just like Jonathon. Her family is so spiritual and has so much faith. They have a wonderful anecdote on the main page about the strength of parents who face their child having cancer. So many people comment about our strength through all of this...it's amazing the strength you find in yourself--strength you never knew even existed--that's because every parent would do anything necessary to save their child's life and to protect them with every part of their being. But, the strength is fragile and the story is perfect. Peyton is a sweetie...her website is www.caringbridge.org/tx/peytonwhite/ Please keep Peyton in your prayers.
If you could also find time to say a prayer for Robert and Harley, two special kids that need a few extra prayers right now as they are going through some cancer treatments that are pretty rough.
We are trying to figure out this place we're in right now...done with treatment, but the specter of cancer looms behind us and we know it's there and we try to work on being strong and positive every day. Jonathon needs that from us.
Tuesday, April 6, 2004
Happy Easter Week everyone! The weather is beautiful here!!
Jonathon's line is OUT!! Yesterday was a great day and certainly a day for celebration for us as a family. All Jonathon has left is a small incision at the exit site that will take about 7 days to heal. The surgeon that performed his original kidney surgery performed his surgery yesterday so it was wonderful closure for us to say thank you to him for all that he did for our son. All of the hospital staff said a big cheer for Jonathon just before the surgery and raised their arms up to the ceiling. It was fantastic.
It's wonderful to see Jonathon without the line anymore. For the first time in 7 months, he didn't have to wear a special onesie--he kept lifting up his shirt and feeling his belly. It was great, great, great!
On top of all that, yesterday we finally saw the first beginnings of Jonathon's hair growing back. He has a fine layer of hair that we can barely see starting to come up. It is totally blond. We are happy to watch our son healing and getting better.
We are thankful to God that our son is in remission. We will continue to pray every day and more that he will forever remain that way and one day we will say that he is completely cured.
We will continue to update and please check out some new pictures at the link below!
Tuesday, March 30, 2004
The news we've been waiting for--Jonathon's final test came back clear! We now finally feel that we can breathe. A surgery is scheduled to remove Jonathon's central line next Monday. We are constantly praying for Jonathon's continued health and complete recovery. We are ECSTATIC about the line being removed. We've been having a terrible time with dressing changes--basically every day and sometimes twice a day. Jonathon has either been pulling the dressing off or sweating it off because of the warm weather. His skin is terribly raw as a result of all the extra medication. Without graphic details, we just need the line to come out now. Jonathon can then take a normal bath, play in the water, get muddy or do whatever he wants to do! We are SO excited for next Monday. It has been nice to feel comfortable taking Jonathon out again. He loves other kids and he's just a social boy. It's fun watching him experience a lot of things we all take for granted.
Please pray for Peyton, Harley, and Robert--our friends who are facing chemotherapy and/or radiation right now. They need our strength and prayers as they continue their battles. We wish we could give a glimpse into the window that we've looked into for months now. Kids facing cancer are AMAZING--they have so much spirit and resilience. It has taught us some amazing lessons about life.
For now, we sign off...Jonathon is healthier than he's been in months. He's starting to get some fuzzy hair, he's filling out and getting his color back. He looks so good. He's also a total spitfire--his surgeon said "that's a good sign that he's feeling better now!!!"
More than ever, we're grateful to God, to Jonathon's doctors, and to our family and friends. Mostly, we are blessed with Jonathon's health. We know we have a long road ahead with many tests, but Jonathon's oncologist said she felt in her heart that Jonathon was going to be fine and that's a prognosis we're taking to the bank!!!
We'll update next week after Jonathon's line is removed! We love you all and thank you for your wonderful and loving support through this very long road in our lives.
Thursday, March 25, 2004
Jonathon had a great day, but we all got pretty pooped at the end. So far, we know Jonathon's heart is doing fine and that the first part of the bone marrow test came out negative. We are only waiting on the biopsy results, which we should get tomorrow or Monday. We fully expect those to be negative, too.
We had a great day at Stanford. Jonathon did so especially well with everything. He loves Dr. Sharma and trusts her so much. He'll let her examine just about anything without making the slightest fuss. He likes to help her hold the instrument to examine his ears. He also steals her stethoscope and listens to everyone's heart. His favorite anesthesiologist took care of him again today. Jonathon gives him big hugs and kisses and Dr. Crane is so sweet to Jonathon. He always carries him to the department where he's getting the procedure to make Jonathon more comfortable. He handpicked Jonathon off the schedule today so he could see him. We feel so safe when we know that he's taking care of Jonathon during his procedures. That's a wonderful feeling.
Jonathon woke up excellently from the anesthesia and ate his standard 2 to 3 popsicles. He had all of the nurses laughing and playing with him before we left. He can be quite the ham!! Overall, it was a very happy day to know that this was Jonathon's last test.
We are waiting for a date to get his line out--it could be next week or the week after depending on when surgery can fit him in for the procedure. THAT will be the best day ever!
Wednesday, March 24, 2004
We're back to Stanford tomorrow for Jonathon's final tests and scans. We start with labs at 8:30, then get the echo at 9:00 and the bone marrow aspirate at 11:30a. Hopefully, we'll be out of recovery by 1:00p or so and back to the East Bay before the traffic begins.
Jonathon's been doing a lot more outside and we're getting back to a little bit of some normalcy. We're just hoping for everything tomorrow to go well and then we can finally breathe a big huge sigh of complete relief.
We'll update as soon as we can with any results that we have.
Friday, March 19, 2004
We only have good news to report today! Jonathon's bone scan was "super!" as the attending radiologist stated to us. We are SO, SO beyond belief relieved and overjoyed. Jonathon only has one test left and that is the bone marrow aspirate. It is highly unlikely that anything would show up in this test--so unlikely that our oncologist debated as to whether or not to even do it. We all decided to go ahead and take the most conservative route so there are no stones unturned.
We saw lots of our favorite people at Stanford yesterday and as usual, everyone was completely wonderful. Stanford is a wonderful hospital--I can't say enough about it.
Jonathon's counts are just sort of hanging out in the marginal range right now. His platelets are 175 (normal is 150 to 400), hemoglobin is 9 (normal is over 11.5), and white counts are only 1.9 (normal over 6.0). We're hoping the counts will begin to escalate next week back up into the normal ranges. We'll find out next Thursday how they're doing. Jonathon doesn't even have to get labs on Mondays anymore!! Our nursing visits will be decreasing. He'll maybe even get his line out before Easter!
Our prayers are that Jonathon will be declared cancer free next week and that he will remain cancer free for a very long and full life. This is a wonderful, spiritual time for our family and we are so happy to begin moving forward.
Despite cancer and how horrible it is, we have been extremely enriched by this entire experience and will probably continue to feel that way as we support our little boy through the many years of his life. We'll update with any news that comes our way. In the meantime, we are going to enjoy Jonathon every second of every day!
Wednesday, March 17, 2004
Here we go for one of Jonathon's final scans--the bone scan. It should be okay--we are saying prayers. We have an EARLY day again at Stanford. We will go to admissions by 7:30am. Jonathon will have radioactive isotopes put into his body (through his central line) at 9:00am. At 1:30pm or so, Jonathon will begin the anesthesia again and at 2:00pm he'll have the scan.
The bone scan will show any active and abnormal cell growth on the bones. Because this cancer has a propensity to metastisize to the bone, this is an important test. Over 25% of relapses are to the bone. Because Jonathon's skeletal survey was negative, it's not highly likely that the bone scan will show up positive for cancer. We feel that everything will be fine.
Jonathon has been having a GREAT time going "bye-bye" in daddy's truck, playing outside in the yard, and taking walks. It has been such a relief to take him out and do some normal things. It's amazing how much we took for granted before this all happened--even going to the grocery store is such a treat!!!
We'll update with the results of Jonathon's scans as soon as we can. Thanks for the posts and all of the positive thoughts and prayers. We check in every day and it really lifts our spirits to know just how many people are praying for our little man. I wish everyone could spend time with him--he's such a wonderful, warm, spirited little soul.
March 12, 2004
Clear, clear, clear!!! So far, all of Jonathon's scans show a preliminary result of CLEAR!!
Jonathon had a long, long day as did mommy and daddy. We left the house by 6:00am and didn't get home until 8:30p. Jonathon's skeletal survey took about 1 hour and he had over 16 x-rays taken of all his bones. He pretty much screamed the entire time--he seemed so scared and he had the biggest crocodile tears I have ever seen. We were glad when it was over. His eyes stayed puffy almost all day after that.
Jonathon's labs showed his counts were up, up, up--no more GCSF shots--EVER. His white counts will drop after coming off the shots and then it will take some weeks before they rise back up into the normal range again. Jonathon's hemoglobin is still marginal, but the platelets are back in the low-normal range already. We don't anticipate that Jonathon will have any more transfusions, but it's always possible that he'll have one more RBC transfusion. That would make 10 total.
We were relieved to find out that the results of the skeletal survey showed nothing other than that Jonathon's skeletal growth has been delayed by the chemotherapy. The oncologist assured us that over the next year, Jonathon would catch up through a few growth spurts. She just said that all of his body's energy has been consumed with dealing with the cancer and the toxins, and therefore, not as much has been available for other more normal things. So, hopefully this will not be a permanent problem. And, it seems minor in compared to the cancer anyway.
Jonathon would not drink the yucky contrast for his CT abdominal scan, so they had to use the ng tube through his nose again to feed it to him. He screamed again, but who wouldn't? It was a really rough morning on Jonathon.
He finally took a nap and woke up just in time to be put back to sleep for his scans. The scans got delayed until almost 4:00p so Jonathon hadn't eaten for almost 20 hours. For a little guy, he hung in there pretty well! We finally got the results of the brain MRI and CT scans at about 6:00p. While the doctors did not have the opportunity to read them in complete detail or provide a final report, the preliminary results were that everything looked normal. We just breathed the hugest sigh of relief ever.
We still have a ways to go, but we feel we're over a big hump. Next week there's still the bone scan. All in all, we're glad to be home and now we all need some rest. We feel thankful to God that so far he is watching over Jonathon and taking very good care of him. For that, we are blessed.
Wednesday, March 10, 2004
We're off to Stanford tomorrow to begin all of Jonathon's final tests and scans. The nervousness is very high. Unfortunately, tomorrow will likely bring back many terrifying memories from last September. We're trying to stay calm and collected and also trying to remember that it is most likely that everything will be fine.
Jonathon has a skeletal survey at 8:15a, labs at 9:00a, a preadmit appointment at 10:00 in day surgery, then he has to drink contrast for his abdominal CT by 11:00a, which he generally refuses to do (who could blame him??). By 1:00p we have to be back in day surgery to begin the anesthesia process and at 2:00p Jonathon will be out for his CT scans and brain MRI. The hardest part is that he can't have anything to eat after midnight tonight. It's going to be a LONG day for a variety of reasons.
Please say as many prayers as you can that our little boy has no cancer left in his little body. That's the only news we want to hear.
We'll update as soon as we have some information.
Greg and Anne
Saturday, March 6, 2004
Jonathon seems to be feeling better now that he's a week past the chemo treatment. His counts haven't dipped down too far yet, but usually Monday is the lowest day. We're so excited that once that dip occurs and the counts start to rise--that's it!!! No more shots, no more chemo. What an awesome feeling!
Jonathon starts his big tests next week. Thursday will be an MRI of the brain, a full skeletal survey (an x-ray of essentially every bone in his body), and a CT of both the abdomen and chest. Somewhere in there he may also have an abdominal ultrasound.
The week after he goes back for a bone scan. The third week he has a bone marrow biopsy. Unfortunately, this last test is very painful. Jonathon will be asleep, but last time he had to have morphine afterward! Hopefully that won't happen this time, but we'll see. Jonathon will also be having a follow up exam with the radiation oncologist where we will get to ask lots of questions about the long-term possible effects of the radiation he had.
Jonathon will get labs every Mon. and Thurs. until his counts are normal again. We have no real idea of how long that will take because we've never been able to see Jonathon's counts recover on their own completely. We're hoping that by the end of March or beginning of April that Jonathon will be well on his way to feeling himself again.
Then, we get to look forward to the central line coming out (hopefully). That will be a day of celebration!
We are up and down and all over emotionally these days. We're just counting down the days when we can take Jonathon out wherever we want to go because we won't have to worry so much about his blood counts. We're taking him to the zoo, and to Tahoe, and maybe on a train since he LOVES trains so much. Sometimes he cries out the word "choo choo" during his sleep. Greg and I think it's the funniest thing ever!
Monday, March 1, 2004
Jonathon reached an important milestone on Saturday--he finished his chemotherapy regimen!
We left on Thursday early in the morning and had a real mixture of feelings going on. On the one hand, we were ecstatic and relieved that this time has come. On the other hand, days of hospitals and doctors visits and chemotherapy acted as reassurance that Jonathon's cancer was not coming back and he was being watched carefully.
On the way to the hospital we saw 4 of the most vibrant rainbows that either of us has ever seen. One of them went from one side of the freeway all the way to the other and we could see every color in the rainbow's spectrum. It felt like we were driving toward it for about 20 minutes. We couldn't help but take in the beauty of it. It was a nice way to begin our last drive to the hospital--it felt like a positive sign.
Jonathon was anti-vital signs the entire time we were in the hospital for his last chemo. He didn't want anyone touching him this time and literally ran screaming away every time someone came near him. Although, he does have some favorite nurses that adore him and for those nurses he was a different kid!
Jonathon was up until nearly 9:30 or 10:00p every night. He received another blood transfusion for RBC on Saturday night that took over 4 hours. We felt relieved when the transfusion finally ended and Jonathon was just hooked up to his IV hydration with the chemotherapy completed.
This has been a very LONG 6 months and we are very pleased that Jonathon is finished and doing well. We have this week and next week for the blood counts to drop and go back up. So, we begin shots again and cross our fingers and toes and hope that we get through the final round without fevers and infections or other signs of illness. Our biggest culprit right now continues to be constipation, which Jonathon has struggled with since the first day he received chemo. That's been very rough on him. Hopefully, with various medications that will slowly begin to ease up for him.
Jonathon will continue to get labwork done every few days for the next 3 weeks and then will go back to Stanford in mid-March for many, many tests. That will be a 2 to 3 day outpatient process with Jonathon going under anesthesia most of the days. So, please know that we are relieved and excited to reach this point, and optimistic that Jonathon is cured. We know the bogeyman is still out there, but we'll deal with that day if and when it ever comes.
Wednesday, February 25, 2004
Well, we're off for the last chemotherapy hospital visit tomorrow. We feel a huge mix of relief, happiness, and anxiety as we approach this last stay and the weeks and months to come with Jonathon off therapy.
We'll update our stay from the hospital! Thank you to everyone for all of the continuing prayers and for following Jonathon's website and story.
Friday, February 20, 2004
Jonathon is doing better. He's still struggling with a few things here and there, but we're handling it day by day with the advice of Jonathon's doctors. Sometimes we're not sure if we should worry more about the cancer he had or more about the effects of the chemotherapy!
His counts went up wonderfully yesterday so we're out of neutropenia. Yippeee!! We're keeping our spirits up as much as we possibly can. Thankfully, we have Jonathon who continually makes us chuckle even during our hardest days. He is our bright spot in everything and quickly brings life into perspective.
This may sound silly, but we're ecstatic and can't wait to see Jonathon's first blond hairs grow back. Unfortunately, this last chemo knocked out all of the new hair growth he had and he lost his bottom eyelashes again. It's going to be wonderful to watch our little boy return back to full health over the next several months.
Thank you for your continuing prayers--as Jonathon nears the end of treatment, he needs them more than ever.
Monday, February 16, 2004
Jonathon seems to be feeling better, but definitely isn't up to 100 percent. He is dancing at every song that he hears, though! That's a great sign and always tells us that his spirits are up. He's our little music man.
Jonathon is neutropenic right now. His counts came back to today and he only has 290 neutrophils. This is usually the lowest point and generally by Thursday Jonathon will no longer be neutropenic. Our bigger concern is that Jonathon has pretty low platelets. Up until now, Jonathon hasn't had to have a platelet transfusion. Today they were at 40,000 when normal platelet levels are between 140,000 to 400,000. They won't generally transfuse until they go below 15,000. It's always obvious when Jonathon has low platelets because bruises start showing up everywhere, especially wherever he gets his Neupogen shot. I think he'll probably escape a transfusion this round, but maybe he'll need one before he's completely done with chemotherapy. We're praying that he won't need a transfusion.
Mommy is in touch now with a few other parents of CCSK kids. It's a wonderful circle of support to be able to talk to other parents who know EXACTLY how this feels. Please pray for Andy, Dustin, Peyton, and Sophia, too. These kids have gone through so much and they need all of our prayers to continue sustaining them in health.
We now wait for Jonathon's counts to start rising and we're getting very relieved to know that the last and final round of chemo is just around the corner. We thank God and all of our friends and family for the love, support and prayer that has helped keep Jonathon strong through his treatments.
New pictures have been posted on our home page.
Thursday, February 12, 2004
Happy Valentine's Day everyone!
Jonathon has been having a rough time since we got home from the hospital. Either the flu or this round of chemotherapy has really gotten to him. His appetite still has not returned and he's been struggling with diarrhea and vomiting a bit. It's making us worried because our normal energetic Jonathon has disappeared for the time being. Each day marks some improvement and we're hoping he'll begin to feel better by the weekend.
This Saturday, mom and dad and nana and papa are having a Valentine's Day party for Jonathon with lots of balloons, toys, and cakes and cookies. We know it will cheer him up and we'll take lots of pictures to post on his website.
We're getting very excited to realize that Jonathon's very last round of chemotherapy is only 2 weeks away now. We can't wait for Jonathon to be able to go outside, have visitors, go places, and just have a more normal toddler life once his immune system starts to recover. He's finally grown some eyelashes back and we can see a little bit of peach fuzz on his eyebrows. We're excited to see what our little boy is going to look like with a full head of hair! We've never seen that yet!
Please say some prayers for Jonathon to feel better and to get through this neutropenic stage without fevers and infections. That's always the big worry during this time.
Tuesday, February 10, 2004
We arrived home late last night. We all got the stomach flu! Greg got sick the night after Jonathon and it hit me last night. We're thinking Jonathon was vomiting due to a stomach bug rather than the chemotherapy. We're not sure. We're home now though and trying to recuperate.
Jonathon did end up needing a blood transfusion before we left the hospital. He started looking especially pale and it turns out his hemoglobin was dropping by the minute. It got all the way down to 7.3 before we left. Hopefully the transfusion will hold him until our next hospital stay.
Today we are just trying to get some rest and recover from a very long hospital stay and our flu!
Sunday, February 8, 2004
Jonathon had his first bad round of nausea and vomiting last night. Mommy left around 10:00p to get some sleep at the Ronald McDonald House and daddy called at midnight to let her know that Jonathon had been vomiting, but was back asleep. Jonathon was later up every hour with nausea and then vomited several more times in the early morning. Daddy spent most of the night cleaning up and doing laundry with the nurses after Jonathon got back to sleep.
We felt so sad for him--you could tell just how miserable he was feeling. But, Jonathon just picks right back up and keeps playing. Today has gone better. We had the doctors move up his Zofran to every 6 hours, instead of 8, because it seems like the vomiting occurred just about the time he was due for another dose of Zofran.
It was hard to watch him get more chemotherapy this morning after he was so sick last night. He's sleeping now and we're hoping he will feel better tonight. Depending on how he's doing, we may or may not be going home tomorrow.
Jonathon's white counts are up high, but his hemoglobin is on the lower side again. We expect that he'll probably need another transfusion between now and our next visit, but that's for another day.
Jonathon's been having fun playing and has had a lot of visitors this trip. He never ceases to amaze us, despite last night!
Thursday, February 5, 2004
All scans are clear!!! The echo looked good too. We were so relieved and happy to know that Jonathon is continuing to do well.
Chemo starts tonight and we're hoping to be home by Monday.
Thank you for all of the continuing prayers.
Tuesday, February 3, 2004
Jonathon is doing well. His white cells dropped after he went off the shots to just about 3000 from 17,000 and his ANC is at 1500. That's still good enough to begin his 5-day chemo this Thursday. Hopefully, they won't drop any further, but will either stay the same or go up. I have to keep remembering that the doctor told us his bone marrow starts to "poop" out toward the end of therapy so we'll find that it takes him longer and longer to recover on his own. This has been really true with Jonathon's platelets. They used to pop right back up to over 300 (normal is 150-400), but now they crawl up and still aren't even to 200 yet. It won't surprise me if he needs one platelet transfusion before this whole thing is over. That's okay, though. We're almost there.
We will be leaving very, very early on Thursday morning as Jonathon's scans start by 8:30a and our drive is over 2 hours.
Other good news--we got a room at the Ronald McDonald House so we don't have to worry about accomodations during our stay at the hospital. We'll probably take turns again each night since only one parent can remain at the bedside during the night.
Please say extra prayers for clear scans and x-rays on Thursday! We'll update from Stanford as to how everything is going.
Sunday, February 1, 2004
Having a hard time today--starting to get the "pre-scan" jitters. I've spent too much time this weekend reading other cancer children's stories and came across too many that talked of relapse, etc. I think I need to avoid doing that ever again. If you wouldn't mind saying an extra prayer for Jonathon today and for Greg and I to have extra strength, I would be very grateful in my heart.
I try hard every day to believe and have faith and to be strong, but sometimes the fear and anxiety can overwhelm. We just want our little boy to be okay.
~Anne
Thursday, January 29, 2004
Hooray! Jonathon's blood counts were great today. His WBC and neutrophils were well above the point where we could stop the shots. This is the first time ever that we get to stop the shots early. What a wonderful relief. Jonathon's hemoglobin is rising and is just below normal and platelets are on the low side of normal again. It feels so great. It's hard to explain, but these little milestones feel wonderful. When Jonathon has no protection against infection or blood clotting or whatever, it is so frightening because it makes you feel so helpless to know that you're little baby is so vulnerable to such serious things. When his counts are up, it's just a complete relief. That's the only way to describe it.
This is just great, great news and we feel a little respite now for the next week until we go in for the 5-day chemo. We're trying to get a room at the Ronald McDonald house, but so far there's no room at the inn. So, they may set us up in a hotel for a discounted price or we may borrow Nana and Papa's camper and park it somewhere near the hospital. We'll see. The best news today is that Jonathon is doing well and we're so incredibly grateful for that.
Thank you all for your love and support. We need it more than ever.
Tuesday, January 27, 2004
Jonathon seems to be feeling better the last two days. He had an upset stomach over the weekend with a bit of vomiting. It seemed like a delayed reaction to the chemotherapy, but it's so hard to know. His spirits have definitely improved, though.
Jonathon's blood counts were surprisingly better yesterday than we expected. His platelets already starting going up, his WBC were still over 2000 (so maybe no neutropenia this time), and his hemoglobin had dropped just a little bit so no transfusions yet. We're hoping that maybe he'll get to end the daily shots a bit earlier this time.
We've been struggling with Jonathon's central line again. We've been having to go through the whole dressing change almost every 3 days for one reason or another. Today, Jonathon just pulled it right off and said "Uh oh." At least he notified us that he took it off! We sure hope the surgery for the central line will happen at the end of March!! Having a 15-20 month old with such a device hanging from his chest has been really tough. He's old enough to be aware of it and to be interested in it, but not old enough to understand the gravity of what it is. Thankfully, Grandma Tanner made Jonathon a whole bunch of special onesies that help to hold and hide the lumens.
Next week is Jonathon's last 5-day hospital visit for chemotherapy. He'll also be having an abdominal ultrasound, a chest x-ray, and an echocardiagram of his heart on Day 1. The echocardiagram is being done because one of the chemo drugs could cause some damage to the heart muscle. This is not likely, but we're glad they're checking. At the end of February, he'll go in for his last 3-day treatment. Three to four weeks after that he has every test imaginable and will be undergoing them for 2 days with general anesthesia again. Finally, we're praying fervently that all of the tests will be clear. Then, the doctor will maybe schedule Jonathon's surgery to have his central line removed.
We are so tired and so exhausted and so worn out, but so relieved that we are nearing the end of all of this. It's almost more than we can bear to think of being back in the hospital next week, but it means we're one more chemotherapy closer to Jonathon being freed from all of these medicines and drugs.
We remain so faithful that this will be the end of cancer for Jonathon. Please, please keep upholding him in your prayers.
Wednesday, January 21, 2004
Jonathon is doing well after his 3-day treatment. He's heading downward in his counts and will likely be neutropenic from now until next week. We're back to lots of handwashing and Jonathon must, for the most part, remain in the house without visitors.
Mom and Dad are tired, but doing their best to keep it all together for these next and remaining several weeks. We're getting anxious about all of Jonathon's upcoming scans and x-rays.
Please continue to pray. Please also pray for Peyton--another child recently afflicted with CCSK.
Much love to all of those who are offering so much support during this difficult time for our family. We continue to be grateful.
Friday, January 16, 2004
We have witnessed pure heartlessness this week. Despite it, we are trying to take what energy we have left from weeks and weeks of stress and exhaustion and put it completely into our son so that he can continue to fight through every treatment.
We are back in the hospital for Jonathon's 3-day chemotherapy. He has been pale and borderline transfusion for more than a week now so he will be getting another RBC transfusion tonight. Hopefully they will give it to him while he sleeps.
The hospital is very busy right now and 2 North, the oncology ward (a very special place) is full. So, we are sharing a room with a 5-year old boy who was just diagnosed with Leukemia. It's hard to have constant interruption throughout the night with nurses coming and going and IV pumps alarming, but the company of another family has actually been kind of nice. The routine we have gotten used to during each hospital visit has been interrupted, but we're making the best of it. Our stay should be short.
We were shocked to learn that another parent's teenage son who we just congratulated in December for being through with treatment had returned with a mass in his lung. Only 3 weeks following being declared in remission, the doctors found the cancer had already returned. We ran into his parents when we arrived on Thursday and just spent the night in dismay. How could that happen so fast? 3 weeks? It's so frightening and unfortunately the fear that we will be facing in the months to come. We just continue to pray that Jonathon's cancer will never return.
We found out on Thursday that Jonathon's central line will likely be removed if all of his scans are clear in March. This was great news for which we are so grateful.
For all of you that are wondering, we are hanging in there the best we can. It's been rougher than rough.
Saturday, January 10, 2004
Seems that Jonathon is likely over being neutropenic and his counts are on the way back up, but moving slowly. His hemoglobin dropped again, though. Frustrating. He's right at the borderline of needing a transfusion and we've been tossing around whether to take him to Stanford this weekend. We're taking it slow and hoping he'll feel okay until Monday when we'll get another CBC to see for sure. Darn it.
Signing off for now....
Tuesday, January 6, 2004
Welcome 2004! We're happy to see the year begin, knowing that this year will hopefully bring an end to Jonathon's treatments.
Jonathon is doing very well overall. He's neutropenic (which we expect about this time), but his RBC maintained after the last transfusion so we don't have to go back to Stanford for transfusions before Jonathon's next 3-day treatment. What a relief. This is our first real break from treatments. We still have a nurse come every Monday and Thursday to take Jonathon's labs, though. His counts should start rebounding in the next day or two.
The shots are going smoothly. Daddy has been pretty sick and unable to care for Jonathon so Nana and Mommy have been the culprits. Daddy has had to wear a mask whenever he's in the room with Jonathon and for the most part has had to stay away from him. It's taken a large toll on Daddy's heart (and on Mommy's exhaustion levels).
Except for some residual pain in his feet and remnants of walking difficulties now and again, Jonathon is running around like a crazy kid and wearing us all out. One of the things that keeps us going mentally is that Jonathon for the most part has very high energy and is acting like any other kid his age.
We're starting to think a lot about the end of treatments. It's coming up soon. It's exciting, but also scary because he no longer will be having chemo or radiation to fight off cancer cells--if they're even there. We believe that's where our prayer and positive energy will take over completely.
Wednesday, December 31, 2003
We're back home now and it feels great to be here. We're getting settled back in and Jonathon's having a great time playing with all his new toys from Christmas that he barely got to see before we left for the hospital.
Jonathon's back on GCSF shots again to help his WBC counts. Mommy gave the shot today for the first time in a long time. Daddy is leaving again on Friday so rather than having a nurse come the whole time he's gone, mommy's going to give the shot with Nana or Papa's help. I was really nervous, but it overall went fine so I felt relieved. We're trying to be as self-reliant as we can for these last few treatments as a way of trying to have as much of a normal life as possible. Can you believe we only have 3 chemotherapy treatments left? We're ecstatic and confident that Jonathon is going to be fine.
We're tucking in for a couple of days--enjoying the tree, some fires in the fireplaces, and some movies. The rainy weather helps it be a little easier to be indoors all the time.
Happy New Year to all our loved ones!
~The Hydorns
Monday, December 29, 2003
Jonathon has finished four doses of his chemo. He'll get his last one tomorrow very early in the morning. We're hopeful that we'll get to go home tomorrow evening rather than Wednesday morning. We've been pretty tied up to the room and we're all getting a little stir crazy.
It looks like Jonathon will probably need another RBC transfusion. We just almost count on it now. His hemoglobin is already at 8.6 (they transfuse below 8) and we're not even to day 7 yet. The counts get their lowest by day 10 so he'll inevitably need a transfusion at some point over the next week. The nurses are checking with the doctors now to determine whether he'll get blood before he leaves rather than making us come back later on another day. We can always see the transfusion coming--Jonathon starts to get ultra cranky and very pale. I hate the idea of him getting a blood transfusion during the night. I feel the same way about the chemo, too. There's just something uncomfortable about not being able to see him up and about and doing well while these things are entering his body.
Over the next week, Jonathon will start his GCSF shots again and he will likely be neutropenic for a good part of the week. Hopefully by next Wednesday or Thursday his counts will start to rise back up again. The 5-day treatment is a biggie and we're relieved he only has 1 left.
Sunday, December 28, 2003
Happy New Year!
Jonathon's 5-day treatment has so far gone okay. Jonathon is in good spirits and has been enjoying some of his new toys.
We continue to struggle with the day-to-day exhaustion of being in the hospital and doing our best to keep Jonathon sleeping at night despite the continuous diaper changes, vital signs, and IV pump alarms. We've been fortunate to receive a nightly meal delivery from my new law firm during this 5-day stay--it's been a true lifesaver. Due to the craziness of the holidays, we weren't even in a position to think about making meals for ourselves this week.
Mommy finally took a night away from the hospital and slept at the Ronald McDonald house. It was hard to leave, but a night of uninterrupted sleep had become a necessity. Daddy stayed this time and did well!
Today Jonathon starts his 3rd day of chemo. We decided to let them move it up a little bit to this afternoon instead of the evening so that we can maybe have a little bit of a break during the night. After the chemo ends, Jonathon's diapers must be changed every 2 hours for at least the first 6 hours. He also receives a drug called Mesna every 3 hours until hour 9. After that, the rate of his hydration is lowered and the diapers get less full so quickly. Tonight, he should be on the slower hydration by 11:30, which might get mommy four hours of solid sleep!
We might be home a day early--on Tuesday instead of Wednesday--if we continue to have them move the time of the chemo up. But, much of it will depend also on whether Jonathon will need a blood transfusion before we leave the hospital.
Please say continued prayers for Jonathon to complete his treatment without complications. It seems like everywhere we go people are coughing and sneezing. It makes us want to run for cover!! Because Jonathon's counts get bottomed out, some infections could be life threatening to him. It's scary, but we're doing our best to protect him from the potential of getting sick.
Have a great New Year's Eve!!!
Wednesday, December 24, 2003
Merry Christmas everyone!
Jonathon continues to do well. He's feeling better all the time and having an extra week off chemo has been wonderful.
We found out that Jonathon's doses of Vincristine were being increased per his protocol and as a result, Jonathon was having some trouble walking in a couple of instances this past week. The doctor assures us that these side effects will continue to diminish, but they will take time. Vincristine has a toxic effect on the nerves.
We are still scheduled to go into the hospital on Friday for Jonathon's 5-day treatment. Because Nana and Papa now live here, one of us will be sleeping at the Ronald McDonald house near the hospital.
We hope everyone has a wonderful, hopeful, and fun Christmas! We'll try and update from the hospital!
Friday, December 12, 2003
Jonathon is done with outpatient chemotherapy!!! We are absolutely thrilled!!! As usual, Jonathon did great at clinic yesterday. He colored, played with play dough, and watched mommy make him a painted Christmas stocking. Counts were doing fairly well, although this is the dropping time. Hopefully by next Thursday we'll be done with the GCSF shots. He's doing better with those, because daddy is quick!!!!! We'll be getting labs taken at home twice next week, but no more weekly clinic visits. Jonathon's next hospital admission will be December 26th for his second to last 5-day treatment. We're getting there.
This weekend we are unfortunately missing a big family wedding in Houston. Congratulations Meaghan and John!! We wish so much we could be there with you to celebrate, but we are with you in spirit and send all our love on your very special day.
Monday, December 8, 2003
We're home after a fairly exhausting 4-day hospital stay. Daddy was in New York all last week so mommy did the first day by herself. The morning at clinic went wonderfully. Jonathon did awesome. He sat patiently with every nurse and doctor. I was so proud of him.
The night was a different story. Jonathon was hit with a pretty tough regimen of chemo that night. He received a full dose of the tough stuff (Doxorubicin) and his whole demeanor changed after that. His constipation went the other direction, he was in pain, and very agitated. It took me until 10:00p to get him to sleep and then he awoke again at 11:30 and was nearly hysterical for almost an hour. I felt so terrible for him and I just didn't know what was wrong. During the night, Jonathon went over 3 hours without urinating at all even though he was on high levels of IV hydration. That sent me into a panic because after receiving Cytoxan it's absolutely vital that he urinates to help prevent bleeding in his bladder. I was sort of standing over his bed part of the night, waiting for him to "pee." By the next morning, Jonathon and I were both completely exhausted. Jonathon looked extremely puffy, too, because he had not passed all the fluid the way he normally does. It surprised daddy when he arrived later that morning. Later, a nurse practioner eased our concerns and said that the Cytoxan sometimes prevents urination, which is why they give so much fluid to begin with. Whew. I just needed to know that Jonathon was doing okay and he was.
Because we were all so exhausted (daddy, too, because he didn't get home from NY until almost 1am), we just had a rough time catching up the next two days. But, Jonathon was doing much better and the next two nights, he slept through the whole night and all of his diaper changes. He started looking very pale prior to leaving the hospital.
Yesterday, they took a CBC to see what Jonathon's counts were doing and to prevent us from having to have a home nursing visit today. Just as we were getting pretty ready to go home, a resident came by and said they would like us to stay until the lab results come back. We weren't too concerned because it was only day 3 of the chemo and we didn't expect any drops yet. We were wrong! Greg came back in the room and told me we weren't going anywhere soon. Jonathon needed a blood transfusion because his RBC dropped below 8. So, more blood draws and a transfusion for the afternoon. We kept Jonathon awake until his blood arrived and we were fortunate because he slept through the entire thing!
We got home around 8pm last night and finally got some sleep so we feel a bit more rested this morning. Jonathon's WBCs are also very low--he's just about neutropenic already. We asked the oncologist about this and she said the bone marrow starts to get "pooped out" because it's being asked to work so hard throughout the treatment. We are likely to see Jonathon's body having a harder and harder time recovering after these big chemos. It's okay. We'll handle it!!
On a POSITIVE note, I came across a recently published medical report (Jan. 2003) that stated "nearly all" CCSK stage 1 patients survived. Jonathon's fellow oncologist stated that every report she came across for her presentation showed about a 98% survival rate for stage 1 CCSK patients, regardless of age, tumor size, sex, etc. That's such awesome news to us! It gives us great hope that our little man will be fine. We do know that relapse-free rates are not as high as that, but they're still fairly low. It's so encouraging to hear these things. Between medical science and volumes of prayer, we feel all of the odds are absolutely in Jonathon's favor.
Today, Grandma Tanner is coming over and mommy and daddy are going toy shopping for Christmas. Finally some fun stuff!!!
Tuesday, December 2, 2003
We had a wonderful Thanksgiving, but a busy one. We headed out the day after to get a 10 foot Christmas tree! We decided we better do it right away because with all that's going on, we knew time would get away from us. Jonathon's first response to the tree was "Oh Wow!!" It lights up the whole living room.
Jonathon's counts did not progress as quickly upward this time. He had to get every last GCSF shot he could get before this Thursday when he goes in for his 3-day hospital stay. We have much shorter needles now, which has helped. We are confident that his counts will be high enough to get his chemo this week. We're really keeping him inside even when his counts are up because of all of the scary stuff going on with certain flu strains this year. We're not taking any chances!!!
Jonathon's suffering from the most common and problematic side effect of the weekly Vincristine, which is severe constipation. Today, I told Greg to "pray for poop." Not to be gross, but this unfortunate side effect lands many kids in the hospital with severe constipation or impaction and can be quite serious if they get infections when their counts are low. So, we're trying everything. It's hard to watch him in pain, but the doctor gave us some additional things to try today so we are hoping to see some improvement by tomorrow. We are so GLAD that he only gets two more weekly treatments of this stuff! He will get it another two more times before the chemotherapy ends, but not consecutively.
We hope everyone is having a blessed and wonderful holiday season so far.
Wednesday, November 26, 2003
First, there are new pictures of Jonathon at Stanford.
Second, Jonathon did SO GREAT today. He is still neutropenic, but his counts are headed up. His WBC went to 1400, but only 200 are neutrophils. His platelets doubled. He had the RBC transfusion for low hemoglobin and there were no problems. We always get a little stressed when he gets blood at the same time he's neutropenic, because if he spikes a fever during the transfusion (which can sometimes happen), it's an automatic 2-day admission to the hospital. But, that didn't happen and when the transfusion was over, Jonathon was again a different boy with cherry red lips!!
Jonathon finished his 11th week of chemotherapy today. That means next week is the big 1/2 way mark. The hardest part is now behind us as Jonathon's weekly visits to Stanford are soon coming to an end. Everyone at the hospital seemed to be in a good mood because of the holidays. We got to speak with some other parents and even ran into the surgeon who performed Jonathon's surgery. We're going to write him a letter to thank him for the amazing job he performed on our son. Now that we know what we know, we realize even more the delicacy of the surgery and that he really did SAVE Jonathon's life.
On a more interesting note, Jonathon's oncologist, who is a pediatric fellow at Stanford, is formally presenting Jonathon's case to a board at Stanford because they have not had a Clear Cell case in more than 2 years. We felt good that Jonathon's case is going to be studied and put to use! She also told us that in her research she came across a study that looked at 14 clear cell patients, 6 of whom were Stage 1 like Jonathon. Those 6 had a 98 percent survival rate. While statistics are meaningless if you're in the unfortunate 2 percent, we'll take that 98 percent number!!
H A P P Y T H A N K S G I V I N G T O A L L!!!!
We have the world to be grateful for this year.
~The Hydorns
Monday, November 24, 2003
Unfortunately, today Jonathon's counts hit rock bottom. He's neutropenic with almost no white blood cells. He also needs a red blood cell transfusion which he will get on Wednesday. The chemo is doing its job! At least he'll have his energy restored for Turkey Day!
We're hoping things will head back up by Thanksgiving. We'll be spending most of Wednesday at Stanford. We feel worried about Jonathon, but that's to be expected considering his condition right now. We say prayers together with him every night and just know that he has many guardian angels that watch over him.
Friday, November 21, 2003
We finished week 10 of chemotherapy. That halfway mark is almost here!!!
Jonathon didn't go neutropenic yet. His counts actually went up to 8000 yesterday. His oncologist said he is still likely to go neutropenic, but if he does, it looks like it will be for a very, very short day or two. That's just absolutely great news.
Jonathon is doing well. We're seeing him change each week. He does really great at the clinic. The only thing he still goes crazy over is the darn shot. He's gotten them at the clinic the last two days due to some big stumbling blocks with insurance and getting a new pharmaceutical company arranged, but today mommy and daddy have to give it. The medication just arrived at our house this morning. On the positive side, it's the shots that keep him out of the hospital so we try to remember that they're a good thing for Jonathon.
Also, believe it or not, Jonathon still has quite a bit of hair for a boy receiving chemotherapy for 10 weeks.
Tuesday, November 18, 2003
We're back home today, Tuesday. Jonathon is doing well. He's even having some appetite already, which is wonderful. The hospital stay was pretty uneventful so we were so very grateful.
We slept better because we're starting to get the routine down in the hospital. We're figuring out what works and what doesn't and it makes it all much easier. We really communicate with the nurses each day (especially the ones that care for Jonathon during the night--because anyone whose had a baby knows the absolute importance of routine and good sleep for the baby) and that helps. In the past some of the nursing assistants continued to take his blood pressure over and over again during the night until they got the "right" reading, which inevitably woke Jonathon up. They'd scoot out afterward and then poor Jonathon and I would struggle to get back to sleep--sometimes for more than an hour. We now just tell each night nurse that his readings tend to be lower during the night and most of them are completely understanding of our desires to let Jonathon sleep as much as possible.
Jonathon had a RBC transfusion yesterday. He looked very white in the morning and his hemoglobin was already near 8 with several more days of dropping to come. He was a different boy after the transfusion. Prior to the blood, he was REALLY cranky. When he was done, his color was back and we had our dancing little boy back. It was great!
We go back to Clinic D for the next two weeks and give the GCSF shots again to help Jonathon's WBCs recover. In the meantime, we have a lot of unpacking and related stuff around the house to do.
Friday, November 14, 2003
Okay, here's a long one again.
Yesterday was a long day. We left the house by 6am, dropped Brandy off at Grandpa and Grandma Hydorn's house and then headed to Stanford. The radiology department was backed up, so we headed to Clinic D to have Jonathon's labs drawn first. We then went back to radiology and Jonathon got his ultrasound and chest X-ray. He screamed through the ultrasound, but was rewarded with 3 big stickers for his efforts. The ultrasound looked at all of his soft tissue organs. Getting these tests done again brought up a lot of reminders of those first terrible days when Jonathon first came to Stanford. I felt really nervous and it must have been obvious because the technician asked me if I was OK when it was all over.
We then went back to Clinic D and waited for a room to become available so Jonathon's oncologist could examine him and tell us if his counts were high enough for admission. Thankfully, they were. They didn't really change much from Monday. Unfortunately, my anxieties and fatigue have been quite high this past week and when the doctor opened up the dialogue about questions and concerns, the floodgates opened and the tears flowed.
I felt better after speaking with Jonathon's attending oncologist who said the anxieties we were feeling were actually quite common for this point in the treatment. She said at first you deal with the shock and despair of the diagnosis and surgery. Then you spend several weeks immersed in trying to take in information and coming up with a routine. When you finally get into some form of a routine and begin to understand all of the tests, therapy, schedules, etc., you start to have time to sit and think again. Then, a second dose of reality occurs and the gravity of what is going on hits you all over again. She was right on the mark. That's exactly what's been happening. All of the sudden, my fears have changed from getting through the chemo and onto--"what if this comes back??" Then what? We try hard every day not to let those negative thoughts creep in, but the reality is that they do periodically. The only thing that keeps us going sometimes is watching our little boy acting just as if everything is A-OK. The oncologist reminded us of how wonderful Jonathon is doing because he really is tolerating everything very well.
We were actually admitted to the hospital pretty quickly and were blessed with getting into a private room that's quite large and has lots of room for Jonathon to play. We continued to wait for the results of Jonathon's tests and my anxiety about it just was getting the better of me. The longer we waited the more I got concerned that they weren't okay. Thankfully, by almost 5pm we got word that all of Jonathon's tests were CLEAR! Thank God. It was the first time all day that I started to calm down.
Jonathon began his chemotherapy at 6pm after being hydrated by IV fluids for about 4 hours. He did well through the night and is having a good day today. The chemotherapy will happen every evening and we'll be here until Tuesday morning. Having the chemo in the evening allows Jonathon to have most of the day "unleased" and it makes everything so much easier.
We're counting down now--3 weeks to the halfway mark and only 4 more weekly treatments. If everything stays on schedule, Jonathon will receive his last weekly chemotherapy on December 11. We then switch over to an every 3 week schedule for hospital admits. These little markers keep us thinking positive.
Please continue praying for our little man.
Wednesday, November 12, 2003 11:43 PM CST
Please say a prayer today that Jonathon will have a clear abdmominal ultrasound and a clear chest x-ray. We're feeling anxious, but trying to stay positive. I'll post with an update as soon as I can.
Tuesday, November 11, 2003 1:31 PM CST
Jonathon's WBC counts fell dramatically yesterday. His oncologist wanted him to have one more GCSF shot before Thursday. We spent an entire day trying to get the medication and a nurse to help me since daddy is gone, but we were unsuccessful. It was too short of notice. She mainly wanted to ensure that Jonathon's WBC counts would be high enough to start the chemo. We'll see--if you remember, please say some prayers. It's been a discouraging couple of days. We don't want delays in the chemo, but it's whatever is best for Jonathon.
Daddy comes home tomorrow and then we'll be gearing up for Thursday.
Friday, November 7, 2003
Thank you for all of your posts and messages. It's so comforting to know that everyone is keeping updated and checking in on Jonathon's progress. We will never forget the network of support that has helped us get through each of these days--it's hard to explain how much it means.
Jonathon's WBC counts went SUPER high!! From Monday to Thursday his white cell count went from 3000 to 32,000! His hemoglobin was 9.1 (below normal, but still ok) and platelets were over 300--normal. I was totally shocked and it almost tickled me. I kept thinking--"wow, right now Jonathon has 3 times the infection fighting cells of what he has as just a normal average boy without cancer." Three days ago, I was worried about the slightest fever. It's so amazing what medicine can do. The best part is we got to stop the shots!!! Jonathon won't have to start them again until after his next big chemo which begins next week.
The doctors think Jonathon is doing just wonderfully and we remain positive that he will continue to do so throughout his treatments. Periodically, some scary thoughts creep in, but we try hard to push them away and remain faithful that Jonathon will be victorious over this disease.
Next Thursday Jonathon will be admitted back into the hospital for 5 days for his toughest combo of chemo. He will also be having another chest x-ray and an ultrasound of his abdomen that morning. The doctors don't suspect anything--it's just part of the formal protocol for all stages of CCSK. If anything were to be going on, it would be better to know than find out later. We'll go in early in the morning, get the x-rays and ultrasound done. Then we'll head to the oncology clinic for labs, urinalysis, and a doctor's exam. From there, we'll be admitted. First Jonathon will have his hydration hooked up for 2 to 3 hours and then he will begin 2 hours of chemotherapy. We expect it to be a pretty long day.
In the meantime, we're just going to try and have some fun and relax and be grateful for good counts.
Wednesday, November 5, 2003
We've been having some difficulty giving Jonathon his GCSF shots. He's such a strong boy and he uses all of his might to kick his leg to prevent the shot. Last Monday, I couldn't even give him the shot--we were all so stressed out from the whole episode that I ended up crying for a good portion of the night. Sticking a needle into your hysterically crying infant is just a darn hard thing to do. Mind over matter isn't always so easy even though I know these shots help him. Since daddy had to go to New York, the nurse has been coming to the house to help me administer the shots. Jonathon's counts dropped on Monday so he has to have the shots for another 7 days. Uggghhhh. At least he's not neutropenic.
Tomorrow is another clinic day and chemotherapy. I'm hoping Jonathon's counts are now starting to rise again. He seems to be fighting a very, very low fever, which I have a feeling might be due to low hemoglobin again (Jonathon is looking pretty pale). Or, it could be teething. We were so involved with cancer treatments that we didn't even realize until just recently that Jonathon has four new molars. That sure put a few things into perspective.
Please say a prayer or two for no fevers, high counts and a good week before we go back into the hospital. Some days are just great, and others really get the nervousness and anxiety going. Despite it all, Jonathon is doing really well--all things considered.
Saturday, November 1, 2003
Jonathon continues to do well. Thank you for all your prayers. He had an absolutely wonderful Halloween. He danced all over the house, helped carve pumpkins, and did a "pumpkin hunt" around the house.
He loved handing out the candy to all the trick-or-treaters. Every time the doorbell rang, Jonathon screamed out "Oh wow!!," threw down whatever was in his hands and went running and screaming to the door. He put several candies in each person's bag each time. It was hilarious and kept all of us laughing and having a good time the entire evening.
It was the first day in a long time that our lives didn't feel consumed by cancer.
I posted some Halloween pictures. All of the photos are now at the link below. Much love to everyone.
Friday, October 31, 2003
Everyone's prayers must be working. Jonathon's counts were excellent. His white cells were over 6000 and his neutrophils were over 5000. At this same point after his 5-day treatment, he only had 500 white cells and then it dropped even lower to 300. Hemoglobin and platelets also look good. We may get to skip neutropenia this time around, but we probably have a few more days that his counts will likely be dropping a bit. I had a rough morning feeling really worried about Jonathon and fearing his counts. I fought my tears back frequently. I was thoroughly relieved to find out that he was doing so well. We're hoping this will be the trend with the 3-day treatments.
Other than that, the day was uneventful. Jonathon played hard in the clinic waiting room. Every Thursday, a volunteer is in the clinic helping the kids with arts and crafts. Jonathon mainly likes to take the caps off of pens and glue sticks, but he has a ball! He always manages to get plenty of stickers from the volunteer, too. We then went to Grandpa and Grandma Hydorn's house where Jonathon loves to run outside, play, and visit their horse.
We are now more than halfway through Jonathon's weekly chemo treatments. He only has six more weekly treatments and then he switches over to every three weeks. The time is going by fast and we are glad that it is. We never have wished time away like we have during Jonathon's treatments. Yet, we are trying to be mindful that this is also precious time with Jonathon that marks itself with much more than just weekly trips to the oncology lab. It's a hard psychological balance these days.
Wednesday, October 29, 2003
This post is an extra special request to all of our family and friends.
Another mom of a child with cancer needs prayers for her daughter. Please say a special prayer for Rena's daughter who suffers from an incurable form of brain cancer. She may only have several weeks to live if her tumor grows. Her family needs strength and the miracle of healing.
~The Hydorns
Monday, October 27, 2003
We're back home now and Jonathon seems to be doing so much better after this 3-day treatment than after the 5-day treatment. His appetite is already back (it took nearly four days for that to happen last time). His color looks really good. I can always tell when his hemoglobin is low because his lips almost become the same color as his skin. We start the GCSF shots again today.
Jonathon still hasn't lost his hair, although it is thinning a bit. He had a couple of days two weeks ago when it was falling out a lot, but then it stopped. Thankfully, his hair is so light and he had so little to begin with that it's not really too noticeable. It'll grow back--everyone says it will come back red!! Hee hee.
Greg and I are getting better at caring for Jonathon's central line. This line has two ports at the end where nurses give fluids, the chemo, and blood. Blood can also be drawn from the port. This prevents the need for IVs and "pokes." The line comes out of Jonathon's chest, tunnels under his skin and up into his neck area where it then curves down and enters into one of the major blood "highways" near his heart. A lot of young children and many older children have these ports during chemotherapy treatment. Because of the nearness to Jonathon's heart, it initially created some anxiety for us, but we're getting more proficient at it now.
Every day, mommy and daddy have to push heparin into both lumens--this prevents blood clots. Heparin is a blood-thinning medication. Each week the dressing over the point of exit in Jonathon's chest has to be changed. It's a several step process that must be done under sterilized conditions as much as possible. These central lines have a pretty good potential of getting infected so everyone has to be careful to prevent bacteria from entering. We use lots of alcohol wipes!! Jonathon usually screams during the dressing changes. We're not sure if some of the things we put on the area hurt or if he's just scared or mad for being held down and restrained. Probably the latter. We're hoping this will get easier with time. Up until Saturday, we always had a nurse help us, but we finally did the whole thing on our own! We're so proud of ourselves!! Daddy did most of it because mommy still is a bit of a chicken on this part.
We go back to clinic D for the next two weeks each Thursday. We'll be having labs every 3 days to check Jonathon's counts. Please say prayers for no fevers and no more tranfusions during the next two weeks. Jonathon's counts will be decreasing this week and probably hitting their lowest by Thursday through Monday.
Other than that, we're all doing pretty okay right now.
I've set up another website for Jonathon that will just probably have more pictures and fun stuff about Jonathon. I only posted one additional picture of Jonathon at the pumpkin patch, but I'll be posting more this week. See the website links below.
Friday, October 24, 2003
Well, this hospital stay so far is going much better than last time. Jonathon is only receiving Zofran for nausea so we have not seen the terrible changes in Jonathon's disposition like we did last time.
Jonathon's first night of chemo went fine. He had hydration throughout the night and is now off the IV pole for the day. That makes things much easier and Jonathon can run around all he wants. He'll get two more doses of Cytoxan--one tonight and one tomorrow night. He also gets something called Mesna every three hours through the ninth hour following the Cytoxan. This medicine helps protect the bladder from severe irritation. During the night, we have to change his diapers every two hours. He gets so much fluid that his diapers get very full, but also this protects his skin from the chemotherapy drug that is generally present in the urine. We have to wear gloves to change his diapers until 24 hours after the last chemo dose.
We have a private room this time so Jonathon has lots of play space and he can run around the room. The rooms at Stanford are really quite comfortable. There's a day bed with an overhead light for one parent to sleep on. There are also private bathrooms in each room with a nice shower. It makes staying in the hospital much more tolerable.
Jonathon is very pale today. His hemoglobin is very marginal still so they will give him another transfusion tomorrow. This will hopefully prevent us from coming back to the hospital earlier than next Thursday for Jonathon's Vincristine.
It's amazing how such terrifying things have just almost become routine now. I still get very nervous and worked up before Jonathon gets the first doses of what I consider the "scary" stuff. I usually struggle not to cry and as soon as it finishes on the IV and he's okay, I feel a rush of relief.
Other than being pale and having a loss of appetite, Jonathon is in wonderful, sweet spirits. He's such our little inspiration.
Thanks for all your wonderful messages. We LOVE reading them and we're saving all of them for Jonathon so he will always know just how much he's loved.
Monday, October 20, 2003
Jonathon's white cells are way up--14,000! I guess I should post the normal ranges on the front page of the website so when I talk about the numbers you all have a reference point. We are totally enjoying feeling free to take him out places. Jonathon's hemoglobin has recovered to some extent. It's not back to where a child who isn't receiving chemotherapy would be, but not low enough to require a blood tranfusion. His platelets are okay, but not super high.
Jonathon's back in good spirits today. We had a lot of fun together playing and laughing. Jonathon's all over the place just being a normal 17-month old. The weekend was a little tough. Although Jonathon doesn't seem to be affected by nausea after his Vincristine treatment, he gets really cranky for about a day or two several days after getting that chemo. His eyes also get real red underneath and he just looks extremely tired. It's really obvious that he doesn't feel good, but we're not usually sure of what's hurting him. It seems like he just doesn't feel good in general. Tylenol helps. He grabs his toes a lot due to the temporary nervous system effects of the drug. The nurse explained that older kids describe it as a sensation of their feet or hands falling asleep and sometimes shooting pains up their legs. It makes me feel sad sometimes, but I just grab his toes and massage them. Then, he runs off and is fine.
Tomorrow is daddy's birthday so we are taking advantage of the ability to take Jonathon out and are going out to dinner with Grandpa and Grandma Hydorn. It's nice to have a few days that actually feel "normal."
We head back to the hospital on Thursday for Jonathon's 3-day chemo treatment. We feel okay about this. This week also marks the "1/4 of the way done" point. Jonathon receives Vincristine, Doxorubicin, and Cytoxan. The Doxorubicin is pretty yucky stuff (well, all of it is really), but it's the chemo drug that studies show has the most significant effect on long term survival rates for this type of cancer. So, as far as we're concerned, as yucky as it is, it's our friend. We plan on coming home afterwards and trying to stay in our family routine as much as we can. It's important for Jonathon, but probably important for all of us. Somehow being in Brentwood feels like an escape from all of the hospital stuff.
We love all of you very much. We'll give an update from the hospital if we can!
Thursday, October 16, 2003
Good news! Jonathon is no longer neutropenic!! His counts are recovering. His white cells went from 300 to 6000 and the doctor expects them to rise above 10,000 by Monday. We can now take Jonathon out. Yippeee!!
Jonathon is doing well. He loves to point out all of the airplanes in the sky when we drive back and forth from the hospital (daddy is so proud). He's starting to say a ton of new words. He said "mama" for the first time last week (mommy--beaming with pride).
We'll continue to give his GSCF shots through Sunday. We'll have a home nurse take labs on Monday. Hopefully, we'll get to stay home until next Thursday when Jonathon will be readmitted for his next big chemotherapy treatment. The next treatment will be a 3-day hospital stay. Now that we know what not to give him for nausea, the stay will hopefully go easier.
For all of the wonderful prayers and care packages--if we haven't said thank you already--THANK YOU. Every single thoughtful thing each of you has done has been immensely appreciated.
I posted new photos, too.
Tuesday, October 14, 2003
We're finally back in Brentwood. We didn't realize how much stuff we moved into Grandpa and Grandma Hydorn's house until we filled up our entire truck and car to go home today. We'll spend the rest of today unpacking and moving back in to our house. It feels great to see our home again.
Yesterday was another long day at Stanford. The home nurse took labs and Jonathon's blood counts had dropped even further than last Thursday. His hemoglobin dropped way too low and Jonathon needed a blood transfusion. I kind of expected that result because Jonathon got very, very pale over the weekend. I almost called the doctor on Sunday, but decided to wait until Monday morning.
We headed into Stanford at 1:30p and they crossed and typed his blood. By the way, Jonathon is type B negative--we have a lot to find out still about directly donating blood and "crediting" blood to Jonathon. When we first arrived, we found out he had a bit of a fever, which could have meant another admission into the hospital if it got too high. By 4:45p, the transfusion began and it finished at 8:00p. Jonathon, bless his heart, sat in our laps the entire time watching videos. Normally, he's running around everywhere so it was obvious to us that he really wasn't feeling very good. One of the attending oncologists told us to be prepared for several more of the transfusions throughout Jonathon's treatments as his chemotherapy is very agressive and when he gets the "big guns," it basically shuts down his bone marrow for about 2 weeks.
The transfusion brought a lot of his color back and he seems to be in a great, great mood today. The fever broke by the time we got home last night so we were so relieved--no more hospital stays yet! It never got high enough to be admitted. I personally have never donated blood before, but I feel grateful to the person that donated the blood that helped my son recover yesterday. It never seemed that important to me until it was someone that I love who desperately needed it. This whole thing has been so life changing in so many ways.
We hope to spend more time at home from now on depending on how things go. We now know the routine a little bit better and are learning a great deal about cancer treatment. We are forever grateful for having Grandma and Grandpa's house to stay at during our Stanford visits. Some of the parents live hours and hours away and either have to travel back and forth all of the time between hospital stays or they stay in hotels. It's heartbreaking to listen to their stories sometimes.
We go back to Clinic D on Thursday for more chemotherapy, labs, and a central line dressing change (unfortunately for Jonathon, the dressing change seems to be the most traumatic thing we do because it is this whole long sterile process--that's another story for another day).
We're hopeful that Jonathon's bone marrow will begin recovering now and we'll see some upward movement in his blood counts. Mommy and daddy are still administering the GCSF shots every day to help the white counts get back up quicker.
Lots of love to everyone!
Friday, October 10, 2003
Jonathon is doing great for all he's been through. We spent most of Thursday back at Stanford in Clinic D--the oncology clinic. Jonathon had labwork done and got his chemotherapy for the week. This week is Vincristine, which is what we call the "lightweight" (in comparison to the others). Jonathon generally doesn't exhibit too much from that other than some numbness and tingling in his toes and constipation (which we so far have under control). Unfortunately, Jonathon hasn't been eating much at all these last few days.
We found out that Jonathon is "neutropenic." This was expected based on the big dose of chemotherapy he got in the hospital last week. This means that Jonathon has so few neutrophils (the category of white blood cells that fight infections best) that he has little or no protection against infections right now. We're hoping that the daily shots we are administering will help those counts get back up by Monday when they will be checked again. We are praying that he gets no fevers during this period or we'll be back in the hospital. Jonathon is also borderline for a tranfusion due to low hemoglobin, but since he looks okay (other than being a bit pale) and is dancing around with energy he's so far escaping that procedure.
We may leave to go back to Brentwood on Monday if Jonathon is doing better by then. We'll then have a 10 day stay at home before Jonathon's next admission to the hospital. We'll have some day trips to Stanford and a home nurse will come in and take lab work. That will be the biggest amount of time at home since this started. We're optimistic!!
The caringbridge website will be getting upgraded this weekend so I probably won't be able to give any more updates for a few days.
We continue to appreciate all of the care packages and love being sent to our little man.
~Annie
Wednesday, October 8, 2003
We are home from the hospital. We're in Woodside at Grandpa and Grandma Hydorn's house which is our second home while Jonathon goes through therapy.
Grab a cup of coffee--this journal might be a little long.
Jonathon's stay at Stanford was exhausting for reasons that we would never have expected. We're all so glad to be done and back home.
Day 1: Thursday
We arrived at Clinic D--the oncology clinic--about 9:30a. We waited until almost 11:00am to get into an exam room. They took Jonathon's vitals, a urine sample, and blood. Jonathon missed his nap and fell down in the exam room at least three times--head bumps and tears. We weren't off to the greatest of starts. We finally left the clinic around 1:00p. Jonathon's blood counts were high enough to begin the chemo round so we were told to get lunch and then go to admitting to be checked in. We finally made it into a room by about 3:00p. Jonathon was one TIRED boy. We were all tired. They got Jonathon hooked up to his IV. The Cytoxan Jonathon is receiving requires him to have nearly round the clock hydration because it can cause severe irritation of the bladder, which may cause bleeding.
After we got checked in, they decided we should be put in a different room with another infant rather than staying with the teenager we were first roomed with. Greg and I probably thought that was a good idea. Parents with little ones can relate a little better to midnight crying, etc. We waited for nearly 2 hours before they opened up the other room. All of our stuff had been sitting in Jonathon's hospital bed, which had been moved into the cancer ward's cafeteria while they cleaned the rooms. In the meantime, mommy and daddy were busy trying to learn how to keep up with Jonathon who was tethered to his IV pole with about a 6 foot "leash."
Prior to the chemo, a nurse started Jonathon on 2 different anti-nausea medications. One is Zofran which works great. The other we had never heard of before. We were relieved to finally get in the room. When the nurse came in to start the bags of chemotherapy, she was dressed in full chemical protection garb. The reality of what was going into Jonathon's little body just struck me over the head. While Jonathon slept and these toxic drugs entered into him, I sat and sobbed. While I knew that these are the drugs that will save his life, I felt afraid. The nurse comforted me and reassured me. When the chemo ended after 2 hours, I felt a sense of relief. He made it through Day 1 of Round 4.
Day 2: Friday
Jonathon had woken up around 1:30 am the first night screaming for about a half hour. I didn't know what was wrong, but he finally fell back asleep so I let it be.
When the next morning came, Jonathon was completely out of sorts. He was screaming most of the morning, crying to get out of the room and melting down over everything. We strugged all morning thinking he just wasn't feeling good or was protesting over his new confined quarters. I started to feel completely frustrated and began to cry. I felt so helpless in my effort to comfort him. Something seemed so wrong, but we didn't know what. The hours passed and nothing changed. Jonathon seemed so highly agitated and wired.
Finally, the nurse practitioner handling his case arrived and right away recognized that he was having what they call a paradoxical reaction to some of the anti-nausea medications they were giving him--especially one. She immediately discharged the order for administering those additional medications and suggested we switch over to two others that the little guys tend to do better with. One of them is Benadryl and as soon they gave it to him, he settled down, got sleepy and took a nap. Later, they gave him another medication that also helps take the edge off. They seemed to work.
By the evening, Jonathon was getting worked up again. The drug they felt he was reacting to wouldn't wear off for about 24 hours from the last dose. He wasn't screaming as much, but he was wired. It was like he just drank 20 cups of Espresso at Starbucks. Greg and I couldn't believe our eyes. At 8:30p, he wasn't remotely sleepy. We all decided to give him another dose of one of the drugs that had worked fairly well earlier. It only intensified the behavior. It didn't even touch him. At 10:30p, Jonathon was literally dancing around in his crib and running back in forth in the bed and if we tried to hold him or calm him down in the least, he screamed. Eventually, we just took him out of the room so we would discontinue the disturbance for the other little baby in the room.
Until 11:30pm, Jonathon was running circles (literally running the halls) around Stanford Children's while mommy and daddy, ready to fall over from fatigue, followed with the IV pole. Finally, we took him into the Day Room in the cancer ward and daddy held Jonathon tight while Jonathon screamed until Jonathon finally gave in and fell asleep. It was an unbelievable night. We told the nurses--Jonathon is only to be given Zofran for nausea and no other drugs. They flagged his chart everywhere so this would not happen again. We could see how bad they felt. Jonathon slept 6.5 hours that night and was up and raring to go the next morning. It was going to take at least another day for the last dose of the last medication to finally wear off.
Day 3--Saturday
Jonathon was in such a better mood, but just a bit wired still. We took Jonathon all over the hospital. He visited the recreation play room where there are other kids and tons of toys. He loved to run outside and take rides on his IV pole. I have a picture of that, which I will post as soon as I can. Check back. Mommy and daddy sometimes had a hard time keeping up, but we did pretty well. Grandpa and Grandma Hydorn stopped by often to provide relief. Jonathon's chemotherapy seemed to be going well despite the other fiascos. By day 3, he received the chemo at noon. He started to lose his appetite, but the Zofran seemed to be keeping him from vomiting. We were so happy that little Jonathon seemed to be returning. He took a great nap and went to bed by 9:00p. Quite an improvement!!
Day 4--Sunday
Things continued to seem more normal, but Jonathon wanted out of his hospital room so he could run and play. He again took a decent nap. We slept whenever he did so we could catch up ourselves. The day was spent running through the hospital with Jonathon. Four days of this was getting pretty tiring, but we were just so happy that Jonathon was acting more himself. Still no throwing up, but Jonathon really wasn't eating anything at all by this time.
Unfornately, Jonathon didn't sleep much that night. Jonathon and mommy were up from 2:30a to 5:30a. For some reason he was wide awake and playing in his crib. Unfortunately, he constantly pulled on his IV line so I had to watch him until he fell back asleep to prevent him from pulling on the catheter in his chest. If he pulls that out, it's an emergency and likely another surgery. No thanks.
Day 5--Monday
Jonathon woke up as early as 6:45a even though he had been awake most of the night. Again, Jonathon was extremely agitated and cranky. We finally got him to sleep at 12 noon. He had already completed his last dose of chemotherapy and we were told we could check out as long as Jonathon was drinking well (the whole bladder thing being of great concern to all of us). Hallelujah!! When can we leave??? Oh, yeah. We still had the CT scan to complete.
At 1:00p, the nurse entered in the room and told us we had to wake Jonathon up to give him some oral contrast for the CT scan. She had just received it and felt terrible that no one had made her aware of it earlier. He had to take it right then. I couldn't believe the sense of frustration I felt. I just fought my tears. We had JUST gotten him to sleep after an exhausting night. If he didn't drink the oral contrast, they told me they would have to put a gastric tube into Jonathon's nose and into his stomach to administer it. I wanted Jonathon to drink that nasty stuff so badly, but he wanted nothing to do with it. So, here was Jonathon--rudely awaken from a deep sleep, asked to drink some terrible tasting stuff, and as a result of refusing, having a tube stuck down into his stomach. It was all I could take. I left the room and again, started to sob.
We then were rushed off to pre-op where we met the anesthesiologist who immediately began telling us of some different drug she planned to use to put Jonathon to sleep. We had already dealt with all of the adverse anesthesia reactions during radiation and finally found the formula that worked well for Jonathon, but she was insistent on using something Jonathon had never had before. We immediately stepped in and said "no," which didn't seem to go over very well. The chaos that was taking place in that room while Jonathon screamed and she battled us just put us over the top. I couldn't stop crying. I wanted to take my son and run as far away from there as I could. Nobody in the room knew how to operate Jonathon's multi-line IV pump which was going off and alarming. The anesthesiologist was being unsympathetic and trying to rush us out to get down to CT. One of the medicines that Jonathon had been given to prevent vomiting during the anesthesia wasn't even finished entering into his system yet and it was supposed to have been administered 45 minutes prior to the procedure. Nobody seemed to know what was going on. For the first time at Stanford, I actually felt a sense of panic for Jonathon's welfare. We found out today that a nurse practitioner who was trying to act as our advocate with the anesthesiologist later reported the whole incident to patient relations for a follow-up because of how upset we were. The stress levels were obvious and she was kind enough to act on our behalf. We really appreciated her care.
Thankfully, I was able to calm down once we got down into the CT area. We held Jonathon while he went to sleep. I cried more, but by the time he was in recovery, I had stopped. We finally got to leave the hospital.
We're now home and Jonathon is doing wonderful. He's back to his usual happy and sweet self. His appetite is slowly increasing. No vomiting. We are administering shots to him on a daily basis at home with a medicine called G-CSF, which is used to help stimulate his white blood cells. Even though having to give him shots is a little uncomfortable, it feels good to be able to do something for him that is making him better. His counts should hit their low point by next Monday and then they will hopefully start to rise again. We're praying they won't get so low that he has to have any transfusions.
We go back to Clinic D on Thursday for labs and for Round 5 of chemo, which is just a quick injection into Jonathon's catheter. We call this week the light-weight chemo in comparison to what he just went through.
Even though this was terribly difficult, it really was more related to drug reactions that were unrelated to the chemo. We're confident that next time will go much, much better now that we know what not to do. We still continue to feel fortunate because it could be worse--the cancer ward at Stanford is an eye-opening and life-changing experience. These kids are fighting for their lives yet they have so much spirit and courage.
Sorry for the length, but I know so many of you have been calling and wondering how Jonathon is doing.
We continue to appreciate all of your prayers and support. Please keep the prayers going--they sustain us.
Wednesday, October 1, 2003
Well, we're all packed up and ready to head back to Stanford tomorrow. We'll likely be in the hospital until Tuesday of next week depending on how everything goes. We'll probably be in Woodside for another week past that. Jonathon will have chemo every day through Monday. He'll also get a CT scan of his chest, abdomen, and pelvis on Monday morning.
Please say extra prayers for Jonathon--we hope that he'll do okay through this chemo. Today was a rough day. Jonathon is sleeping peacefully now and tomorrow is a brand new day.
I found out from another parent whose child is also suffering from cancer that there are often resource centers for parents at the hospital where I can access the internet. I'll try and update the website from the hospital as to how Jonathon's doing if I can.
So much love to everyone for all their prayers and support. Again, it means the world.
Sunday, September 28, 2003
Jonathon only has one more day of radiation. Thank God for small blessings. He's been doing so great. Greg and I wish we had half the energy he has. He's running all over the house! Some days, Jonathon looks more tired than he acts. Overall, we're just pleased with his progress so far. We even went to the pumpkin patch on Saturday. Mommy and daddy went a little crazy buying pumpkins for Jonathon, but we had a lot of fun. I posted a new picture of Jonathon in the photo album from our trip to the pumpkin farm.
At Jonathon's last chemotherapy treatment we found out that every third week, Jonathon's chemo would not be just a one day treatment. Instead, it's five or three days in a row depending on the cycle he's on. I fought my tears back so much during that visit. As Greg said--we felt like we had been "sucker-punched." We thought we were finally getting into a bit of weekly schedule instead of a daily schedule. Everything has felt so abnormal that we were seeking some sense of things becoming a bit more routine. We felt so discouraged for the afternoon, but then we picked ourselves up and just decided to accept it and take the next steps. Greg keeps reminding me--we're going to win some battles and lose some battles, but we're fighting to win the war.
At first they told us we would be going into the day hospital every day for about 6 to 8 hours while Jonathon got hydration and two chemotherapy drugs--cytoxan and etoposide (two heavy duty ones). His attending oncologist then later decided that he should be admitted to the hospital for the first 5-day cycle because of his age. They want to be able to monitor him closely for fevers, infections, allergic reactions, etc. We actually felt relieved by that because all of this is really scary. Depending on how he does, he may or may not be admitted each time for these longer cycles. They expect this cycle to drop his blood counts very low and they informed us to be prepared for a blood transfusion (just in case that becomes necessary).
Daddy is going back to work on Monday for three days and will be back on Wednesday. Jonathon will be admitted to the hospital on Thurday through the following Monday or Tuesday. While he is in the hospital, he will also be getting another CT scan of his abdominal area. This unfortunately means more general anesthesia.
Please say some special prayers for Jonathon during this hospital stay. We're nervous about what to expect, but if he gets through it the way he has so far--he'll do excellent.
I'll update the website after we get home from the hospital.
Tuesday, September 23, 2003
Thank you to everyone for all the wonderful messages and support for our family. It touches us our hearts in a way we can't even begin to explain.
Jonathon started his radiation therapy yesterday. Because he's such a little guy, he goes under anesthesia each time. We're not sure what's harder on him--the radiation or the anesthesia. Yesterday, he had a hard time waking up. Sometimes the drugs they give children for this deep sedation causes an extreme agitated state upon waking. That happened yesterday, but once that passed Jonathon did great.
Today they changed the "formula" a bit so that Jonathon would wake easier, which he did. Each day we arrive at the hospital at 7:30a and Jonathon is usually awake in recovery by 8:45a. The radiation itself only takes several minutes. Today the nurse told us that some children get radiation and anesthesia three times a day and some for several weeks. So, despite how hard this feels sometimes, we still feel blessed that this part could be much, much worse.
Unfortunately, Jonathon did get quite sick today. He rebounded pretty quickly, though. It's hard with a 16-month old because they can't tell you when their tummy hurts or when they don't feel good. We're not sure what's from the radiation and what's from the anesthesia. We're just taking it hour by hour--literally.
Sunday, September 21, 2003
Jonathon was initially diagnosed with what we thought was an inguinal hernia. He had a full distended tummy and had been running low grade fevers on and off for about 3 weeks. He had been seen by a pediatrician several times, but no one discovered what we later found. A week before his surgery to get the hernia corrected (Monday), Jonathon was playing outside in the water when I noticed that his stomach had a slight bulge to one side. That night, I felt his tummy while he slept and felt that his right side was soft while the left side was very firm. I just felt instinctually that something was really wrong. The next day (Tuesday) I took him to the pediatrician. The pediatrician sent us to the hospital for x-rays that afternoon. After the x-rays were completed, Jonathon's pediatrician ordered a CT scan and informed us that he was quite sure Jonathon had a tumor on his left kidney. He believed it to be a tumor called a Wilms tumor and the only comfort I could find was to hear that it was operable and highly curable (over a 90 percent cure rate).
The night before the CT scan was horrifying. I didn't want them to find anything worse. Fortunately, The CT scan confirmed the original diagnosis and as weird as it might seem, we felt relieved. Our pediatrician immediately set us up with a surgeon and an oncologist at Stanford Children's Hospital in Palo Alto, CA. The day we met with the team of physicians at Stanford, they informed us of several more tests that Jonathon needed to have before his surgery. He had a chest x-ray to confirm no spread to the lungs, a doppler ultrasound to confirm no spread to the vena cava into the heart or renal artery going to the other kidney, and a blood work-up. Each test brought an additional sense of anxiety and when each one came back okay, we breathed a huge sigh of relief.
By Friday, Jonathon was in surgery to have the tumor and his left kidney removed. It was a long, stressful four hours. The surgeon emerged from the OR with his thumbs up in the air and informed us that he was able to remove the entire tumor. He also let us know that he saw no evidence of spread. The tumor was huge--approximately 1.5 pounds. We couldn't believe it. We were just so relieved that Jonathon had done so well. He didn't even have to go into the pediatric intensive care unit (although he spent time there because there were no regular beds available).
Jonathon spent four nights in the hospital. He recovered very well and to our amazement. Now we were just waiting for the pathology report to come back to confirm that it was a Wilms tumor so that he could start his chemotherapy treatment. We went into the oncologist's office on Thursday morning following the surgery to get the results of the pathology. I was not prepared to get the news I was about to hear. It wasn't a Wilms tumor--it was Clear Cell Sarcoma of the Kidney--a much more aggressive cancer that has a propensity to spread to the bones and the brain. Bones and brain--those were the only words I heard. I couldn't stop crying. I felt like I had been hit by a Mack truck and just sat in shock. Jonathon would now have to have a bone scan, an x-ray of every bone in his body, an MRI of his brain, a bone marrow aspirate, and an echocardiagram of his heart. Thankfully, the lymph nodes were already known to be clear of the cancer.
I cried all day while the tests were being done. Jonathon spent most of the day under anesthesia. I prayed and prayed that all of the tests would come back clear. It wasn't until the next day that we got the good news that Jonathon had Stage 1 CCSK. There had been no spread to anywhere else in his body. Now we could move forward to his treatment and concentrate on what we have to do--helping our son fight this cancer.
Jonathon will have 24 weeks of chemotherapy and 6 days of radiation. Most of the chemotherapy is on a weekly basis and some of the treatment will require hospitalization. His radiation starts tomorrow, September 22, 2003. He has already had 2 doses of chemotherapy and except for one day when he was sick following the first treatment, he has been zooming around like nothing's wrong.
I will try and keep this site updated with Jonathon's progress. Thank you for all of your love and support and especially, your prayers. ~Greg and Annie
Saturday, September 20, 2003 4:03 PM CDT
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