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Archive for February, 2009

2/25 Morning Update

You have probably noticed that the postings have gone from several times a day to one or two posts a day. The old adage ”no news is good news” certainly holds true. Ryan is still receiving his continuous 24 hour chemo treatments. He is very tired, but we are able to convince him to get up and walk around as well as eat at least some of his meals. He is taking eye drops to protect his eyes and has even started taking some of his steroid dosages in pill form. Taking pills is a huge win as he was never able to do that before coming to the hospital. I spent the night with Ryan last night and he slept soundly all night. I’m hoping his teacher will come by today and help him with some more of his classwork and help keep him mentally engaged.

Victoria went by his cub scout meeting last night and was able to give them a report. He can’t wait to take the next camping trip we can!

We were able to talk about some time at home. After Ryan finishes this month, he will be done with his treatments for ~20 days. During that time, the hospital will focus on getting his vitals and blood levels to a safer level. They will then be able to send Ryan home for a while. We must still be careful with him. We will still have to give him injections and medications at home. A fever of any level means a trip to the ER. The doctor recommended that if he goes home that we take him out to do things he enjoys. Got to a movie, but go during a midday matinee when there are fewer people that may be infectious. Go to Wal-Mart, but go at midnight when there are fewer people. Go to his school, but wear a mask. All of these would be huge wins for Ryan emotionally. After that ~20 day period, he will restart the same chemo treatment schedule that he started just after diagnosis which will mean another 3-4 weeks in the hospital. That cycle (23 days of  treatment, ~20 days off) continues for the 3 cycles. The doctor said even one day at home followed by a month in the hospital is considered a win, we are praying his vitals and levels will allow for a bit more than one day.

Bryce and Deanna started their after school program this week and so far they love it. Bryce asked his teacher if he could come back tomorrow and play with everyone. Several of our church friends are helping with getting Deanna from her preschool program to the after school program and I can take a late lunch and do it myself if there are issues; there are still some logistics to work out, but things are going much better than I thought. Praise God that in the midst of a trial, His Body is there to minister. How do people without that “hope that is within us” cope in such trying situations? Are we (am I) truly “prepared to give an explanation for that hope”? (I Peter 3:15) Lord, give me the words to say to those brought into our life due to this circumstance that you may be glorified.

Stay tuned, we will report more later. Thank you and we love you!

The mid-day report for Feb. 24

Last night Troy and I were at the house while our friend Carol spent the night at the hospital with Ryan. I’ll tell you it was strange to be at the house with Troy, Deanna, and Bryce, but I slept so sound last night. It was great!

Ryan did get sick last night, but Carol didn’t call us to let us know. After he got sick, Ryan went to sleep – so we wouldn’t have been able to do anything for him. Because of the chemo, the doctors have decided that they are going to stick his finger to draw blood. They don’t want to take any more blood than necessary. I can tell you Ryan will not like this, but we will do what the doctors want. Also, the chemo he is on now may cause his eyes to dry out and get infected. Starting today, he will get eye drops, and he is not wanting to do this either. Troy has explained that he is going to have to do things he doesn’t like in order to get better. I think he understands this, but that doesn’t mean he likes it!

Today Ryan is watching some TV, playing his gameboy, and he even did some of his school work for Ms. O’Mire. His teacher here, Ms. Juila, is really impressed with how smart he is. Ms. Julia is trying to make sure that Ryan stays caught up with his school work so he won’t get so far behind.

I think that is all for now. I am still in shock that we have been in a hospital since February 2 – where did the last 3 weeks go? I have no idea what is going on in the real world – well, the world outside of Ryan being in the hospital. But I do know that life goes on.

2/23 midday report

Well… it’s been a busy day around here. Before I could get to the hospital, I some errands to run. I had to do Kindergarten pre-registration for Deanna and I had to get all that paperwork together. Then I got up here after Ryan’s LP was done. The doctor said that everything went great, and this time Ryan hasn’t complained about his back hurting (so far). At 11, they did a 30 minute IV push of some chemo, and then started the big bag. This bag will run for 24 hours. That’s right, 24 hours, and then they’ll hook up another one of those bags and do it all again. Ryan doesn’t like the yellow medicine, so his nurse put a pillow case on the IV pole so he doesn’t have to see the bag. Just me it’s a big bag, bigger than the IV fluid bag, and I think that is what is bothering him.

Now for some fun stuff. We haven’t posted any pictures in awhile, and Troy asked me to do just that. So for those wanting to know if Ryan has felt well lately, just look at the pictures below.

2/22 Evening Update

We had a great day. Sorry for the late post. Victoria, Bryce, Deanna, and I were able to go to church this morning. It was great to worship with most of my family. Victoria did write a note on the bulletin that said “I miss Ryan sitting with us.”

Since his tests were good this morning and since he will be starting chemo tomorrow, we called a couple of Ryan’s friends to see if they could come visit on short notice. They didn’t disappoint. Ryan was lying in the bed feeling tired when his buddy Landon walked in, his eyes brightened, he sat up a bit and he talked without whining for the first time in a while. Landon’s mom even helped break the ice by showing the scar from her chemo port. Ryan kept talking about that even after she left. A little later Trey came by. He and Trey played with lots of the toys Ryan had. They sat there for an hour and a half. It was so encouraging to see him just having fun. Duncan and Caroline came by as well and got to visit as well. He walked them down to the playroom and got to spend 30 minutes there before they closed. Today was a day where “a kid could be a kid” and he did! AMEN! Thanks for coming by guys! We look forward to him being able to see the rest of his friends as well.

On the medical front, his white blood count was up to 2,100. I confirmed that his chemo would start tomorrow morning with yet another sedation and another lumbar puncture. His IV chemo will start around 11:00 am and go every 12 hours for the next few days. Praise God for another day He has made.

Our Sunday School class is studying “Don’t Waste Your Life” by John Piper. As we were talking today, I was struck with relativity of “importance” in life. Over the past three weeks, there have been many “important” events have come and gone. Deadlines at work have been missed, little league tryouts are not happening for us, spring yard work and trimming has yet to be done, others have even had to take over teaching children’s church for us, and on and on and on. Believe it or not, the world has not stopped. Are any of those things insignificant or bad? No, but put into our current situation, the are certainly less important. As Christians do we have the proper scale on the things of world? Were we not given the most value and ultimate gift possible in a Saviour? Do we keep that at the top of our importance scale (and far, far above other items)? Do our actions support that? I fall woefully short. I know, not profound, and something we have all heard before. It’s different when you are able realize something in your heart instead of just being told in your head.

Thanks everyone, God Bless!

Evening Post – Feb. 21

I really don’t have much to say tonight. Ryan’s hair started to fall out today, so Troy gave him a buzz cut. Ryan really doesn’t like it, and now he doesn’t like his scar. How do you handle that knowing full well that it is all part of his treatments? I know that his hair will grow back, and I know that the scar will fade but it will always be there. It’s just hard to hear him complain about things like losing his hair, the scar, popping his back (which he really wants to do). But I know that there will be a time where his hair will grow back and his back can be popped and his scar will be a testament to his battle with cancer. As a mother, I want to fix everything, and I know that I can’t.

On a different note, Troy’s dad and stepmom will be sitting with Ryan in the morning so the rest of us (Troy, Bryce, Deanna, and I) can go to church together. Ryan is really missing church, and he will let you know it too.

Everyone have a blessed night. I’m off to rest a bit while Ryan is eating some of his dinner and watching some TV.

2/21 Midday Update

I’m late posting. We both slept well last night. After they started his transfusion, I don’t think Ryan moved from 10:00 until 6:30. Surgery came for Ryan around 7:00 this morning. They took him back and were able to adjust his port. It had shifted a bit, so it was not a major surgery. I was waiting for him as he woke up in recovery. His port seems to be doing great now. He is back in the room and just finished his breakfast.

As for lab results, his weight was up 0.8 lbs. His white blood count is up to 1,000 and his ANC is 240. All drastically better than yesterday. He is still susceptible to infection, but is well enough to start his next chemo round. His doctor was very encouraged.

As for the ups and downs of chemo treatments, today is a up day. May we learn to praise God for every day we have, good or  bad.

We will report more later. Thanks and God Bless!

For those wishing to send cards, I confirmed the proper address to get here is:

Ryan Harrison

Floor 3c – Room 367

Blair E. Batson Children’s Hospital

2500 N. State Street

Jackson, MS 39216

2/20 Evening Update

Well, there is a lot to report since this morning. First off, I slept 13 hours last night and have felt much better today and am not at the low level I was at the last time I posted. WOOHOO. I told you I had mood swings. HA!

Ryan had a good day. He was even able to do some of his homework with his hospital teacher. His art therapist came by and he painted a bit. He was more excited to show her the painting he had done on the pinewood derby car. I’ll post pictures when he gets the final coat of paint on.  We put together his Star Wars legos kits that he received today. Well, he put together the small one. WE started the big one and he wanted ME to finish it after about step 5 of 120. I can’t believe the age on that kit was 8 years old, there were hundreds of tiny pieces!!! I’m sure there were a few extra in the kit because they were left over when we finished. I couldn’t have missed a step. Not me! Regardless, it was fun and he has to show all the nurses the completed kit as they walk by. Thanks to the Barrett’s for the legos!! We read cards he has received in the mail and comments from the blog. We had fun with the 20Q game, that thing is just too cool.

He is even getting more comfortable with taking his daily shots to boost his white blood count. AMEN for the numbing cream. My dad and stepmother arrived around 3:00 and got to spend most of the afternoon with us in the hospital. All in all, it was a good day of rest, Praise God. He is very tired right now and awaiting them to come up from the blood bank for his transfusion. I did give him a shower tonight and as I was drying him, the towel filled with strands of his hair. I pulled a few out by hand too, won’t be long now. He has several caps to wear and he seems comfortable with the thought of being bald; I guess time will tell. 

Tomorrow morning he will be having anesthesia again for the surgeons to repair or replace his port. They got it drawing and flushing pretty well today, but it is still not what they wanted. If he were near the end of his treatments, they would have likely dealt with the one he has, but given the amount of medications he still has scheduled to receive, they are going to fix it tomorrow. I spoke with his Dr. today and his ANC is rising. They are going to hold off on restarting his chemo treatments until Tuesday to give it a bit more time. He has to be off of Neuopgen 48 hours before they can start and that is the drug that raises his cell count. 

One more item, the child life specialist came by and brought a book “It’s not a rumor, I have a tumor.” It is a survivor story of a 6 year old boy with Burkitt’s lymphoma, the same as Ryan. It was great to read with Ryan and got him asking a few questions and we had a good talk about his cancer. It is a blessing to have resources such as that available and for the hospital helping to get them in our hands.

Thanks everyone for the prayers, the encouraging words, the cards, the meals, the gifts, the hugs, the everything! I don’t know what we would do without that support. God Bless!

Morning report for Friday, February 20

Ryan has been in a great mood this morning, and it does my heart good to see him coloring, watching TV, and painting his Pinewood Derby car. The doctor has already been in this morning, and he was pleased with Ryan’s progress. His WBC was .28 (up from .16 yesterday), and his SEGS was 16.0 (up from 10.0). That means his ANC 45, and yes, that’s up from 10 yesterday. I’m giving God all the credit for this, because He makes it possible.

Troy’s dad and stepmother are coming down this weekend to help out with the other two kids. Troy is here at the hospital now so I can go home and do a little work in the house before they get here, and to give me a couple of hours away from here today.

Thanks again for all your prayers and comments. Both are so encouraging.

Evening update – Feb. 19

This afternoon has been an eventful one. After a second xray, they figured out what caused Ryan’s port to quite working properly. It had a clot at the end of the line. So after the line sat with blood thinner for 2 hours, the nurse was thrilled with how it was drawing. It is such a huge praise, because if that didn’t work, the next step was a surgery to replace the port. So, thank you God for answering this prayer.

Ryan had a great afternoon. He actually was cutting up with the nurse. He did have a visitor, and that visitor dropped off his Pinewood Derby car. He started painting it as soon as they left because he was so excited about it. He is hoping that Troy can take his laptop to the derby so he can watch it from the hospital. We’ll just have to wait and see.  :)

Since he had a great afternoon, he is ready for bed. His incision is bothering him, so the nurse is replacing the bandage for the night so he can sleep. I’m praying that tomorrow will be more great news.

2/19 report for the morning

Sorry it has taken awhile to post this morning, but I can get to all my ducks in a row first.  :D

Ryan had a rough night last night. The IV needle in his chem-port failed and wouldn’t flush or draw blood. The machine was going off all night and they finally got it to take the IV fluids, but Ryan had to stay on his back all night – which he didn’t like. But this morning, his nurse had an idea and it has worked so far. The needle was running up and down (head to toe) and she turned it to the side, and he got to lay on his back without the IV machine going off. The xray on the port showed it was in the right position, and his doctor (after hearing what the nurse did) was thrilled!

I also checked on his ANC that Troy talked about last night, and the chemo nurse told me how it was calculated. You take the WBC and multiply it by 1000. Then you add the SEGS and the BANDS together and that is a percentage. You use the WBC * 1000 and multiply it by the total of SEGS and BANDS, and tada! your ANC is calculated. So, for example, Ryan’s WBC was .16 and SEGS were 10.0 and BANDS were 0.0.

.16 * 1000 = 160

160 * 10% = 16

So, Ryan’s ANC is 16 for today, which is good as it is going up, but it’s bad as it needs to be 200 before they start the next round of chemo. This new round is scheduled to start on Monday, but if the ANC is not 200, then we are on hold until it goes up. Please pray that it goes up and let the next round start.

Ryan has had a great morning. He wanted to drawn in his notebook, and then he wanted to play Battle. Well, we did, and he won. Oh well… I was thrilled he wanted to play a card game.  :D

Troy and Victoria Harrison