Kevin's Update 28 Jan 2012

Today is the first day we did not have to see the Doc or go to a clinic since the 3rd of January. On Friday I was told that my counts are good enough that I will have one more visit to the Bone Marrow transplant clinic on Monday.  If nothing has changed for the worse over the weekend then Kathy and I will be able to leave the Hope Lodge on Monday evening and return to the house.

I will have to have a weekly appointment with my regular oncologist for some time to come.  In March I will return to the BMT Clinic for evaluation for a clinical trial.

Over the last couple of weeks we have received a number of cards.  Here are some pictures of the cards.  The bright colored cards are from the T&T Kids in AWANA at our church and the kindergarten Sunday school class.

  Have a great day!!

Kevin

24 January 2012

I am still in the hospital. Maybe only for one more day. My white blood count continues to go up although it is still far from normal. Last night I only had one fever spike which was limited in duration and did not get above 101. That is a significant change from the last four days.

I had a new PICC line emplaced yesterday so they can continue treatment with out using an IV. That was critical for me to be released from the hospital and continue in an out-patient mode.

I feel better generally but there are things that are bothering me now that were not before this short hospital stay. One of those things is the amount of pain I am having while standing up. It feels like my hips are going to implode. Hopefully that will decrease as I begin to move around more.

We will post more later.
Kevin

Monday, January 23

Yesterday started out on a positive note. But things turned bad in the late afternoon. I developed a fever that went above 103. My doc changed some meds, put me on ice packs and a cooling sheet, and slowly my fever went down. Then during the night I started have some extreme stomach issues. It was a long night and very concerning. This morning I feel much better and I am eagerly awaiting my last lab results so I can see if my white blood count is still moving up. Hopefully some of the other counts will be improving as well.

Sunday AM the 22nd

Kevin is still battling a fever. Yesterday he up around 103 a lot and that was pretty scary and uncomfortable for him. He also started having "gut issues". His whole body rash has gotten worse too.

Kevin was able to sleep a bit last night. Hard to do between the nurse visits and him having to get to the bathroom. :( But he slept in between those interruptions.

Good news about the fever is that once over night he got down to 99.7. But he got up to 101.6 again and that is the magic number for them to take another blood culture. Did that about an hour ago. But at least over night he wasn't up to 103.

He is now in isolation because of the stomach issue. So everyone that comes in has to be fully gowned etc.

We just realized that his hair is starting to come out this morning. I was starting to wonder if that would be happening or not.

I'll let you know any changes as they happen. But this morning he looks better than he has in several days. He is talking and looking alert!

Blessings,
Kathy

Saturday the 21st

I don't know where to start. I guess I will just give you the highlights (or should I say the low lights)

Kevin started a fever Thursday night/Friday morning. To the hospital for blood cultures. They drew them from all 3 of his PICC lines and from his other arm. They wanted to know if there was an infection in his blood or in one of those lines.

Then to the BMT clinic for the rest of the morning. We went back to Hope Lodge and around 7pm I noticed that he had a rash. Called the doc on call. He told me to give him Benedryl so I had to find some one at HL to babysit him (he can't ever be left alone) so I could run to the store.

He ran a fever in the middle of the day. Then again around midnight. So I set my alarm for every 45 minutes to check on him. Called the doc on call at 6:30 and he said to get him to the clinic. They gave him a new antibiotic because the one that they gave him Friday morning was causing the rash. They also told us that one of the PICC lines was positive for strep! Fever up to 103 After they gave him Tylenol!

I brought him to the hospital around 11. He was put sraight into a room. They took the PICC line out that has the strep infection and put in 2 IVs. Now they are giving fluids and a new antibiotic. Right now he is down getting a ct scan of his lungs.

So if all goes well and his body does what they want he will be in the hospital till Tuesday or Wednesday.

He still has no white blood cells so he has NO immunity at this point. Within the next day or 2 his body should kick in and start making those cells again. But I don't know what this set back does to that.

Thanks for caring about us. The love that has been showered on us is amazing!

Blessings,
Kathy

Fever again

Kevin's fever was gone at the hospital. But they treat any fever as if it is an infection. The cultures won't be back for 3-4 days. So we won't know if this is an infection or just his body's response to all the stress it is under.

We left the hospital after 7 and went straight to the BMT clinic. They did lab work. Found that his platelets were down to 6. 10 or lower is when they give platelets so they gave him a bag. They also gave fluids because he is unsteady on his feet. A bit of potassium too.

He is pretty weak and we had to use a wheelchair today to get him around.

I'm writing this at 3:30 and his fever is back up to 101.

The good news is that the nausea is gone, or at least for now. So he has eaten a little bit today. And he is drinking pretty well.

Please pray that: the fevers go and stay away
Wisdom and calmness for me
That his blood work looks better tomorrow

Blessings,
Kathy

Trip to the hospital

Just when I was getting used to our "groundhog day experience" of the same old same old...... Kev woke me at 3 with a fever. NOT a good thing for him to have.

The rule with transplant patients is you have to call in immediately if you hit 100.5 - even if you only stay there for 10 minutes, still gotta call. Well he hit 101.1 so I called. They put me straight through to the transplant doc on call and he said they would be waiting for Kev in the cancer ward at KU Med. So here we are. They took blood from each of his 3 PICC lines and one from his other arm. They want to make sure that he doesn't have the infection in one of the PICC lines or out in the blood stream.

Next he will get IV antibiotics. We will hang out here in the room until 7 am and then we will head over to the BMT clinic. The hospital is NOT a place we want him right now. He is at the lowest point right now so he has no immunity. There are way too many bugs in a hospital that he can catch so we want out of here as soon as possible.

I guess this put a little break in our routine. Not a good one!

Keep on praying!
Kathy