Don: Karen’s counts are on the rise again. They had leveled out and even dropped a little. Now they are 1500. Her white blood cells are part of the formula that comes up with that number. Yesterday they made it up to 1.4 and today they are at 1.9. On Dec 3rd I posted a note and mentioned that Karen had a bone marrow biopsy and we were waiting for the results. We got them that evening. No leukemia cells, small clusters of red cells and small clusters of white cells. Cancer is officially in remission again. Let’s pray that they can keep it that way this time!!
We do have an issue or two that is keeping us in the hosptial but we can talk about those later. I mentioned that main one in the last message.
Don: A couple of weeks ago Karen was going to need a CT of her tummy and digestive area and they needed her to be clear as possible. That means she had to drink Go Lightly. A whole gallon. There was really no way she was going to be able to drink the amount they wanted her to have. She asked for an NG tube so they could put it into her belly without having to swallow it. Good thing she went that route because the one gallon the first night was not enough. She had to do it again the next night to be ready for the procedure.
A couple of days ago I got to see the NG tube in action (sort of) again but this time it was for evacuating the tummy as she currently has an obstruction just pass the belly. Pressure was building up so much that each morning she would throw up and then would feel better. Her little tummy was really distended because it was not relieving her of all the discomfort. Another good use of an NG tube.
You might think that they are simple and foolproof. They almost are. The biggest problem, especially for evacuating, is that the tube must be the right distance into the tummy. They measure from the nose to the ear and then down to the tummy on the outside and use that as a guide. After placement they pump some air into the tube using a big syringe and listen to see if they hear bubbles in the tummy. Then they hook you up to the suction device and see what happens. If it doesn’t completely place well, then they get an xray and put in a little more or pull it out some. Let’s just say that the first night it didn’t work well, the next day and night weren’t much better and on the next day they pulled out the first tube to put in a bigger tube. Things started moving, then stopped. They did an xray and found they weren’t deep enough. 15 cm needed to go in. Started working, then stopped. Finally did another xray and found out that the hose was too long and looped up and must have pinched off. Pulled it out a little and things started working real well!
Wait! We aren’t done yet. During the early morning hours the tube came out of the tummy and out to the throat area. We had to push it back in. At least they had a mark on the tube so they knew where to put it without having to get an xray. Karen is understandably in a lot of discomfort in her nose and throat from all of this in and out movement of the tube. She does feel better in regards to the pressure though.
That wasn’t too much information for you all, was it? Prayers for comfort today please. She really needs an easy day after so many in a row of discomfort.
Don: This cancer battle – being in Gainesville for most of 14 months, in Shands this time for more than twice the number of days we had to be in after Bone Marrow Transplant, missing the kids, our lives on hold and the list goes on – stinks. On so many levels we are frustrated because we are not in control. We are troubled about the one step forward, followed by the two steps back. We all feel it. Madeline and Ken feel it. Dennis, Dylan and Jacob feel it. Ma, Big Randy, Randy and Heather feel it. Karen’s sisters, my brothers and Dad feel it. Don’t even try to list all of the friends, nurses and others who also know just how much this stinks. They feel it, too. That’s the honest truth.
I just got off the phone after having a conversation with Dennis. It reminded me that you all need to hear from us, even when things aren’t great and especially when they are. From where you guys sit, not knowing may be worse than knowing. Well, here is some more honesty. We are scared. When I say “we” I definitely mean every one of us. Yet we have a peace. The peace comes from the prayers that are said, over and over, for Karen by all of us. If you believe in Jesus and you believe in prayer, then you must feel a peace when your prayer ends. Madeline found a new song on YouTube that sums it up for all of us. Listen and see if you agree.
Don: Karen had it a little rough on the day of Dec 1 and then rougher still on the 2nd. It is the morning of the 3rd and she really had trouble during the very early morning hours. Lots of tests yesterday. The last one was a CT of the lungs and where she only had a little in one lower lobe, she now has some in both. Her heart rate runs high, usually over 110. The monitor starts beeping if it goes over 125. Later evening it was beeping a lot as she stayed right around the border. With the issues she was having this morning, they have decided on more tests. She had a surprise bone marrow biopsy yesterday and we should get some results this afternoon. We need those before they can make a complete game plan. There is a lot to take into consideration but we must know whether we have leukemia cells trying to come back before we make any decissions.
Please Pray for comfort, peace, healing and that the doctors make the best decission for Karen.
Well, I feel much better this afternoon after receiving more platelets and 2 more units of blood. I was able to do about 6 laps around the nurses station when yesterday I could barely get one lap in. I am looking forward to getting discharged which may happen in a couple days. My white cells continue to improve as they are at 970 today. Don went out and bought me a burrito and some nacho cheese from taco bell and I was able to eat almost half with some milk. I don’t feel like I have much appetite but I will continue to push myself to hopefully maintain my health and strength. They are giving me more fluids since I havent had much output lately but after all the lasix I probably just got pretty dried out. All of my organs seem to be functioning pretty well, with the exception of my tummy and a little bit of lung problems. They are planning on discharging me with oxygen at this point to help with any difficulty breathing. I just keep putting one foot in front of the other praying to my dear Lord for guidance and strength. This is a difficult battle and easy to get discouraged but somehow through the love and continued support of family and friends I am pulling through yet one more time. I am very much looking forward to going home to Panama City again and having Christmas with my sister (and her family) from Virginia, and of course the rest of the family who lives in Panama City. It will not be hard to remember the true meaning of Christmas this year as funds are tight, and energy to shop is minimal to say the least. I am also very nervous to get out in the crowds for fear of getting sick. We plan on focusing on the Birth of our dear sweet savior Jesus Christ, and the love of family and friends. It will be the best Christmas ever! Continue to pray and I hope during this busy holiday you too will remember and praise God for the gift of his Son. love karen
Don: Today they delivered fresh fruit to Karen for the first time in over 3 weeks. She didn’t eat it but at least it is now available. Tomorrow’s breakfast is going to be yogurt with fruit. Yogurt has also been restricted until Karen got over 500 again. These little things help us to know that she is improving. We love the feeling of security that you get in this environment but the goal has always been to get back to the world and life. We are getting closer. We know that your prayers have helped tremendously in getting this far. Today Karen is feeling very weak. We have not been getting in her daily walks for 3-4 days. We went out this morning and only made one lap around the floor. Prayers for continued growth in WBC and RBC while keeping away any growth in luekemia cells are greatly welcomed. It is also time for her to gain strength and she is no longer on the automatic pain medication so we need prayers for comfort as she starts taking pills to contol the pain. When you start growing cells in the bone marrow it makes you ache, alot. Thank all of you for what you do for her.
Don: We just keep praying and moving forward. They removed the automatic pain medicine delivery. She can still push the button if she needs it. This is really a great step towards being able to be discharged. Her oxygen level is holding pretty good at 2 liters, so we just turned it down to 1 to see how she does. She cannot be on pain pump or oxygen when they release her. She thinks they might be as close as two days away from release. We won’t be able to go back to PC for a little while though. Her counts are at 588 today. WBC and RBC both moved upward slightly. That’s another good thing. More later.
Don: Guess who has counts of 500? That’s right. Karen. White blood cells have been at zero for 3 weeks and started moving up two days ago. First to .1, then .2 and now they are at .5. She is getting platelettes tonight because she was all the way down to 5. The normal range is 150-450. They don’t have to jump too quick usually not gving them until she is under 10. Anyway, we are moving in the right direction. Just have to start getting her off of oxygen and pain pump. We have already been working on that, too. It won’t be long before they discharge her, this keeps up.
She has had two full days of visits from the Fantastic Four. The kids have been just great. All hanging out with their Mom in a crowded hospital room. They brought our Wii from home, another computer of mine and two computers of Heathers. We never had just one kid here at a time, but with all the distractions that were available she still had some one-on-one visiting with each of them.
My kids arrived wednesday evening and we are set up to spend some great time together as well as celebrate Jacobs’ 15th birthday. I love a nice big thanksgiving dinner, but since I’m not really eating and stuck in the hospital we will come up with a dinner.
Also white count appears to be coming up finally, so as long as there are no luekemia cells this is a good thing. Not sure when I will be scheduled for another bone marrow biopsy. Anyway, have a happy thanksgiving and know that we will be too. love karen
Don: Karen just said a prayer of thanks to God. Her counts finally came up off of zero! She is at 180. Both she and I are afraid to celebrate, for fear that there may be some mistake (already happened once this cycle) but having reviewed all the data more carefully, it appears that this may be real.
What makes us even more happy than having a few white blood cells is that the kids are here! All four of them came together. This is going to really be a great Thanksgiving weekend. We will have 3 days of visits with the kids, they will get to have some sibling bonding time (xbox, wii and two TVs in their room), Lisa M is trying to come by, Lisa S also plans to be here, Karen’s parents are still here with us in Gainesville and then let’s not forget those counts are finally on the rise!! Thank you God for all these blessings and more. Amen.