Day + 43

It is now 6 weeks post transplant and Dale continues to do well at home. He started home schooling. His first day was yesterday. His teacher is the same teacher he had 3 years ago when he home schooled for a year so there was no first day meet the teacher anxiety. She is wonderful and Dale really likes her. Dale's labs are fairly stable. His ANC has been between 4,000 to 5,000. WBC - 6.1 - 6.4. Hgb - 9.7 Hct - 30.4 Plts - 61,000. He hasn't needed a transfusion since he was discharged but we'll see how that goes. The liver enzymes are however somewhat rocky. It goes up and down. The total bili is now 0.8. It was 0.5. The doctors added a new medication - mycophenolate (MMF) to try to control the upswing in the liver enzymes. They think the reason for the rise is GVH (Graft vs. Host disease - Derek's marrow or Dale's new marrow is "attacking" Dale's liver) His blood pressure is also high from one of his medications so now he has to take medicine for that too. The pill count is now 23 pills a day. He takes them all diligently without question. Today Dale and I went to a tennis court and played a little tennis. He is allowed to play outside as long as he wears a mask and he stays away from crowds.
We didn't last too long. We both got hot and tired but it was fun. Dale still spends most of his day doing is school work. Danny still has a cold so Dale and Danny are not allowed to be in the same room at the same time. Dinner is eaten in shifts. Derek, being the diplomatic brother, sits at the dinner table the entire time Dale eats and then while Danny eats. I make sure Derek is not eating that entire time he is sitting at the dinner table. Those of you who know Derek know that he probably could eat during both shifts. One of their favorite games they play now is Mad Libs. It has all of us laughing. Thank you all for your continued support and prayers. Grace and peace.....

Day +36

Today was our first post BMT clinic appointment. We went in at 9am and finished by around noon. We saw some familiar faces. Some of the attending doctors and fellows who took care of Dale in the hospital were there. Labs from yesterday's blood draw at home by home health were wbc - 5.0 ANC - 4140 Hgb - 9.6 Hct 27.6 Plt - 100,000. The repeat platelet count today was 75,000. He may need another platelet transfusion again soon. The liver enzymes were up again. If the enzymes continue to increase, the doctors are thinking of adding another immunosuppressant mediation to keep the new grafted marrow from attacking the liver. Not another pill! We hope and pray that liver will start to recover or at least not worsen. Another set of tests showed Dale was not drinking enough liquids at home. So, Dale is on a mission to drink around 2500 ml/day . Dale takes walks around the block now, somethimes even two times around. He patiently waited fot NCAA baskeball to start up again. Yesterday , Dale made a paper chain from paper Percival the penguin sent in the mail.
It has 65 links to represent the count down to 100 days post transplant. He cuts off one link each day, (Thank you - Percy)
Thank you for your continued prayers.

Dale's team of nurses

This is a picture of Dale with some of his nurses right before he took his first step out of isolation. Check out the balloons . Look familiar? Can you believe it ? They are still going strong!! (Thanks again Chad!)

Day +33 and +34

Day + 33 was Wade's birthday so Dale baked him a cake. He really did bake him a cake . All I did was crack the egss for him because I did not want him to touch the eggs. He wore a mask and gloves to protect himself and baked an awesome carrot cake. He had good training from Auntie Millie. Having a good memory helps too. He remembered things that he and Millie did when they baked the cake together before. I of course, didn't remember. His labs from Monday were pretty good.
wbc - 5.2 Hgb - 9.2 Hct - 27.7 platelet - 183,000. The platelets got a boost from the transfusion on Sunday. ANC - 3375. Dale has since started back on a medicine called Dapsone for PCP prophylaxis. This drug can cause bone marrow suppression so hopefully his counts will continue to improve despite the initiation of the dapsone. His labs will be checked again on Thursday. Having Dale home was probably the best present Wade could have ever hoped for.
Day + 34 - The sun finally came out today so Dale went for a walk down the block after riding his pedal bike thing. He came back with tired legs. The day whizzes by for me now that I don't have the conveniences of the hospital services. We are grateful to have Dale home. Friday is his first clinic visit at UCLA . Thank you for your prayers. God bless you all.....

Day +31 and +32

Day + 31 - Labs wbc 2.84 ANC - 2087 Hgb - 8.8 Hct - 27.4 Plt - 36,000. The liver enzymes came down a little again. As long as the liver enzymes come back down even a little, the doctors are happy. The doctors had told us on Friday if the ANC remained above 1000 and his cyclosporine level on Saturday was therapeutic, then Dale could go home on Sunday 2/18. Well, it all fell into place so Sunday evening, Dale was discharged home!!! Last week Tuesday or Wednesday when they were starting to talk about a goal date to go home, Dale told me that he would be ready to go home on Sunday. I thought it was a long shot since everything had to turn out perfect for this to happen. I told him not to get his hopes up too high but he said Sunday would be the day and sure enough it was. He prayed every night and meditated after his prayers . He calls it "brightening his light" (something he learned from a friend at church) (the light refers to God's love) His faith in God remained strong through these past 6 weeks. He has a long ways to go but he is determined to get there. Dale , although home now is still in protective isolation for 100 days after the transplant. He has to wear a mask when he steps outside of the house. Danny and Derek both had caught a cold so they were at Grandma June's when Dale came home. He went straight to the sliding door where his dog, Eski usually sits. She looked at him and started barking. I guess she didn't recognize him with no hair. As soon as she heard Dale's voice ,she calmed down. He then went into his room and looked around. Danny and Derek eventually came home and Dale ran to greet them but keeping his distance for fear of catching their cold. If Dale develops a fever, we have to go back to UCLA. If he catches a cold, his counts could drop and it would be a set back for him. We have a new set of challenges but Dale slept peacefully in his own bed last night . I think we all slept well last night.
Day + 32 - What? No scrambled eggs and french toast for breakfast? Dale and I realized quickly this morning that breakfast would not be sitting on the table at 8:30 am. ( At UCLA, Dale's breakfast was brought in every morning at 8:30am) By the time Dale and I got up, Danny was gone, and Wade and Derek were almost out the door. We will have to get back into the early morning "rush around the house" routine again. The home health nurse visted today bringing supplies for his central line care. It is now my job to flush his lines with heparin and change the dressing everyday. I miss the nurses already. The nurses and staff at UCLA were really wonderful. We were very happy with everyone who took care of us. I have to say "us" because they took care of me too. Later in the day Dale took a break from his studies , put on a mask and sat outside on the bench on our porch. He said the chiily air was "refreshing". This evening we watched a couple of basketball games (recorded on DVD by one of the dads) that his team, the Pacers II, played a few weeks ago. He really enjoyed watching them play and win! At 10pm, he marched into the kitchen,took his 6 pills and went to bed. I think in one day Dale swallows 16 1/2 pills. I have trouble just taking my vitamins. We are so grateful Dale is home. Thank you all for helping Dale get through his hospital stay with your prayers and support. We ask for your continued prayers as he still faces a long journey ahead. God's Grace and Peace to you all.....

Day + 29, + 30

Day + 29 labs - wbc - 2.2 ANC - 1600 Hgb - 8.7 Hct - 26.4 Plt - 41,000 We were excited that the wbc stayed in the 2's. The liver enzymes went up a little again but the doctors felt it was still fairly stable. My college roommate came to vist (Kathy O) so we went for a walk to UCLA and had lunch at the what used to be the Treehouse in Ackerman Union. It is fancy food court place now. Sally sat and visited with Dale. We walked through campus back to the hospital trying on the way to remember what each building was called . It was a nice break. Dale of course did his schoolwork and then watched the NCAA games keeping close track of the wins and losses. He proudly announced that he was ahead of me by four teams. So far, Derek and Dale are doing pretty well on their predictions. Dale received a letter from his Arlington teacher today. It brought a big smile to his face as she filled him in on the lastest room 31 news and drama. Dale is very blessed to have such a wonderful teacher and classmates.
Day + 30 labs wbc 2.6 ANC - 1860 Hgb - 8.8 Hct 26.8 plt - 45,000 . cyclosporine level 206 (goal - 200-300) so he just made the cut off. Dale worked on his letter back to his class today. He seemed to enjoy writing to them. After writing the letter, it was pretty much basketball all day. Dale told me he watched every single NCAA game on TV today. I've never seen Dale watch so much basketball. Funny how a little monetary incentive will peak your interest. Dale was started on oral steroids tonight. One more step closer to going home. Thank you for your prayers. Blessing to you all...

Day +28

Dale is now 4 weeks post transplant. His labs this morning were questionable. Some of the numbers were way off (Hgb- 14.2/ Hct - 42.6) so the labs were repeated this afternoon. They came back better but this time the wbc was 2.98 and the ANC - 2000. That's a pretty remarkable jump from yesterday so they we will be repeating it in the morning. The Hgb/Hct the second time came back 9.5/28.6 which is more consistent with the previous labs. platelets - 61,000. This to me is questionable too. The big step for us today was the i.v. cyclosporine was changed to oral. He took 6 capsules but it was better than being hooked to the iv pole for 4 hrs. Dale worked hard during the day to finish his school work before the UCLA game. We had a lot to do since we had to catch up from yesterday. He finished it all and UCLA won! After the game, Dale and I played "horse" . I lost again. It's not that I didn't make any shots but Dale would make the shot after I made it so he hardly got any letters. He then played with his basketball hat for a while. After dinner, he watched a show one of the nurses told him about called "Are you smarter than a 5th grader?" He really got into it. It was fun to watch. Our nurse today was Dale and Derek's transplant nurse but unfortunately for us, today was her last day at UCLA. ( Good luck Lisa!) Thank you for your continued support and prayers. We could not have come this far without it.