Friday, February 27, 2009

Friday Evening and Thankful for a Weekend!

First, I would like to apologize for the delay in this update. It has been a long week and I have not been able to get to a computer outside of work to update. Now, where do I begin?

Dad is home and recovering from the ulcer issue. He seems to be ok, but who knows for sure. He wouldn't tell us if he was still hurting, but his color seems better and he seems to have more energy as well. Both Susan and I ended up with upper respiratory infections, and had to stay away from Ryan and J5 while he was in the hospital. This was very hard on Ryan, Susan, and myself. We have been together day in and day out, so it was tough not to be there for him. Mom spent the two nights with him and we really appreciate it because it is not like you are sleeping on a sleep comfort bed at the Hilton. Anyway, on to Ryan......

Ryan was taken into the hospital Tuesday night with a temperature of 104+. He was achy all over and they were sure he had the flu. After several tests and multiple cultures, everything came back negative. He continued to have spikes in his temperature through midday yesterday, he seems to have recovered well, and they let him go home late this afternoon. His counts are still hovering in the questionable range on WBC, 2.2 and Platelets @ 38. His HBC is good at 11.5. The VOD issue has cleared up. His Bili score has come down to 2 which is good and the other function are normal. He plans on spending a quiet weekend at home, and I don't plan on being around him without gloves and a mask. He is very very happy to be home in his own bed.

Thanks to all who have call and emailed, we really appreciate you following Ryan's progress and praying for him.

Wednesday, February 25, 2009

Can we be Home and at the Hospital at the same time? Version 2!

Just a quick note to update everyone, Ryan is now back in the hospital with a high fever, Dad has been released and I'm just about crazy!

I will post a more updated blog after work when I am at the hospital with Ryan!

Tuesday, February 24, 2009

Ryan, Dad and the road to Recovery....

Who should I talk about first? Ryan? Dad? Updates, Updates, Updates.......

Ryan has enjoyed a quiet day at home just continuing his slow recovery progress from the VOD. Not much to report which after the past two weeks is a welcome statement. Ryan will go back to Children's on Thursday for more labs. Hopefully with rest we will get Ryan healthy. And yes, I am still being a strict dad and trying to isolate Ryan so he doesn't end up back at Children's sick. But this time, he is not fighting me.

Now, Dad. Dad was admitted to Mount Carmel West due to a loss of blood and not knowing where it was going. Add on top of that the prior two weeks of Ryan losing blood and the VOD issue and I am sure you can understand our concern for the worst. They did give Dad several bags of blood and a few tests. Luckily, we found that he had a bleeding Ulcer in his stomach area. The doctor says he will be fine with rest, medicine and time. He will be staying another night in the hospital just as a precautionary measure.

Thank you for all your concern, calls and prayers. Please remember the other families on J5. Ryan buddy Joe Friend had surgery on Friday and is doing well. Please keep him and Holly in your prayers as he is facing a long 36 week chemo schedule. Ryan has developed a bond with Joe and he has such a great attitude and outlook. He is a special kid.

Monday, February 23, 2009

Can we be Home and at the Hospital at the same time?

Ryan is still at home, though as I write this we are fighting a low grade fever. (99.4) Please pray that this stays below 100.4 so we don't end up back at Children's before Thursday's labs. He is not feeling the best so I hope that he is not coming down with another cold, etc.

Today Ryan was in the day hospital having labs drawn and test run. The good news is that his blood counts continue to increase. His WBC was 2.2, HBC was a whopping 13.1, and platelets were up to 58. The bili score for his liver had went back up slightly to 4.0. We need this to go down to .1-1.0, so this explains why his color and eyes are still yellow. Overall, Dr. Yeager seemed happy with Ryan's progress considering how sick Ryan was a week ago.

Now for the question in the title. As many of you know, Susan and I take care of Ryan at home evenings and weekends. My parents, Ryan's grandparents, have been his primary caretakers during the day. Without their support and care, I truly do not know how we would have done this. I also know I am going to get grief from my dad for posting this. But I really don't care what he thinks at this point! Please keep my dad in your prayers as he was admitted to Mount Carmel West today. He is having some health issues of his own and they are running a series of tests to determine what is causing these issues. Once we know more, I will post them. We have been so concerned for Ryan that we may overlook what each of us have done, but I want Mom and Dad to know how much Susan and I appreciate their help.

Saturday, February 21, 2009


After almost two weeks in the hospital, Ryan convinced the doctors that his progress and improvement would be better at home. Even though he is sick, many of you know, he is very persuasive. Doctor Yeager agreed and Ryan has slept ever since we got home.

Ryan's WBC count is still low. When we left the hospital yesterday, it was 1.4. His HBC count is excellent at 11.1, and the platelets are still low at 33. We are happy to have him back home and hopefully it will allow him to rest and recuperate faster. The VOD will keep Ryan from doing any chemotherapy for at least another two weeks. Once they feel that it has healed enough we will continue treatment.

Ryan is still weak, and nothing says that more than having Blue Jackets tickets for tonight's game and Ryan telling me he doesn't think that he is strong enough to go to the game. Again, another time where Ryan is showing his growth in decision making. With and the flu and colds out there, I am happy to keep him isolated from the masses.

Thank you to all that have called, visited and just followed Ryan through the blog. The thoughts, prayers and concerns have not gone unnoticed. We want everyone to know what it means to us and Ryan to read people's comments and words of encouragement. Thanks.

Wednesday, February 18, 2009

Update 2/18/09

Ryan's counts have stayed the same with the exception of the WBC and the Platelets. His white blood count went down from 2.0 to 1.5 yesterday and his platelets dropped to 34. these need to be in the range of 6 and 200+ respectively. Ryan had an MRI yesterday and the results are pending.

Please keep praying that his WBC and Platelets increase as these numbers are the ones that will heal the liver function. Otherwise, Ryan seems to be doing ok, he is not in as much pain, but certainly getting restless being in the hospital.

Monday, February 16, 2009

Update on Ryan 2/16/09

"You don't know how strong you are until being strong is the only choice you have."

Ryan continues to be strong! He is battling this condition and he is a winner!

Ryan's counts have stayed stable over the last 24+ hours. His WBC is still around 2.0. HBC is just above 10, and his platelets are 36. The liver function score called the Bili score has stayed at 7.6. The bloating around his stomach has decreased and his color continues to improve. Ryan had an ultrasound today and it showed the liver was starting to improve.

This is not something that will improve quickly, but will take some time to improve. As long as the numbers continue to trend the way they are, Ryan is expected to recover. One issue that the doctors told us is he will have to monitor the type of foods he eats for the next month. I don't know if Ryan will be able to survive without buffalo chicken from Wings and Rings, Rooster's or Canes.

We enjoyed watching the Blue Jackets together tonight, even though we only got 1 point. 5 points in the last three games is not bad, but we sure wish they had won. We don't know how much longer we will be in the hospital, but we are trying to take it one day at a time. Thanks again for every ones thoughts and prayers.

Saturday, February 14, 2009

Update on Ryan 02/14/09

Ryan is still fighting the condition known as VOD. Our current understanding is that it is a very slow process and that it is really dependant on his CBC counts increasing. So as of 9pm this evening, his HBC was 9.8, WBC was 2.0 and his platelets were 24. These are still low and we need them to continue to trend upwards. The bloating of the stomach area has stayed constant which is good. His color is not nearly as yellow and he seems to be alert. Though he is not out of the woods, he is making positive progress. We are still monitoring his liver function scores and will do so for the near future.
Thank you to all that have sent Ryan well wishes and prayers. He continues to need the support.

Have a Happy Valentine's Day!

Friday, February 13, 2009

Ryan is still at Children's

Sorry for the delay in updating the blog, but this has been an unusual admittance for a fever. As we said in the last post, Ryan was admitted to Children's late Monday night. His fevers usually last around 48 hours and the timing of this latest issue fell during our planned trip to The Buckeye Cruise for Cancer. This is the second annual trip for The Stephanie Speilman Cancer Cruise and for any Buckeye, it is a trip to remember. We spoke to Dr. Yeager on Tuesday and left with his assurance that it looked to be a normal fever that they could treat and release Ryan and that it should not be an issue for us to go. 23 hours later after a brief stop in Orlando, we were back at Children's with Ryan. No cruise or time to recoup is more important than being with him during a hill that needs to be taken. Once we returned you could tell Ryan was at peace having us home and there will be no more planned trips away from him until we win this battle!

Ryan has a condition called V.O.D. This is a side effect of a chemo drug called Cyclophosphamide. My understanding is that this is a side effect than normally is seen in bone marrow transplant patients. However, a few cancer patients bodies get to a point where their bodies can't receive any more of this drug. Ryan is there. V.O.D. effects the liver to the point that the liver function slows down and the liver itself starts to swell. They can't treat V.O.D., they can only treat its symptoms. They have been working to regulate the pain medicines so Ryan can be comfortable during this time. He is sedated most of the day. (For all of you that know Ryan and are use to his texting, I wanted to add that update as his phone is in the draw beside his bed.) Ryan will be in the hospital for another week or so and they will be monitoring his counts and keeping him stable manually. Please pray for Ryan as he continues to be a strong fighter and he REFUSES TO LOSE!

I know I just posted this a week ago but after this issue came from nowhere, I think it is worth posting again. Each and every kid on J5 is a fighter. To what point, they determine their own fate. Tyler and Olivia have fought and are winning their battles. Megan and Joe are battling relapses and seem to be doing well. We miss Trey and Mason who fought with all they had yet knew when the battle was over. The list could go on and on.......

“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.”-Author unknown

Ryan's candle is still strong! Flicker it might but it is not going to be extinguished!!

Wednesday, February 11, 2009

Ryan is back at Children’s

Ryan was admitted to Children’s late on Monday night due to a fever. In the past, the fevers have been related to infections of the bladder, his central line, etc. The temperatures usually last a day or two and we get to go home.

Unfortunately, Ryan has continued to have fevers through today, and the source of the issue has yet to be determined. Please keep Ryan in your prayers as he battles this unknown illness. His counts are low and he is sleeping through the day. I will update the blog as we find out more information.

On a good note, Ryan was able to watch the Blue Jackets with his buddy Joe Friend who is in this week for chemo as well. Please keep Joe and all the kids on J5 in your prayers as each one has their own hill to climb.


Wednesday, February 4, 2009

Update 2/04/2009

“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light.”

-Author unknown

Ryan has completed another round of chemo as the countdown begins towards to end of our treatment plan. This round of chemo really affects Ryan. Though he feels awful from head to toe, I have been more impressed with Ryan’s ability to deal with the cards he has been dealt. The let down he felt after missing the Blue Jackets Black Tie Event, the ensuing round of chemo, he has really shown personal strength and growth in how he is handling the issues. As someone told us, “On a separate note, I really could not be much more proud of Ryan. He is really reaching out, and is dealing with things in a lot more healthy way. It’s still a heck of a mountain, but I see some peace in him that is really great to see.” It is a very tough hill, but I am very proud of Ryan and how he has dealt with this awful situation. He is a winner and we REFUSE TO LOSE!

Please remember the Woods family in your prayers as they lost there son Mason yesterday at Children’s. He was nine years old. Trey’s Aunt Lissa mentioned in her blog that Trey now has a buddy to climb trees with. That is a great way to think about it. Also, remember Ryan’s friends, Megan Compton and Joe Friend as they start their treatment plans for a second time.