Thank you all so much for your prayers…today was proof they are working. Charlotte’s numbers were beautiful today!! Her hemoglobin only increased by 0.1 today, but it was a tremendous sign that it went up rather than down. Her WBC, platelets, and neutrophil count all increased wonderfully too! Dr. Desantes ordered special testing today to check for the autoimmune disease. So far the initial results look good. With a smile, Dr. Desantes told us “we’re fine today” which is about as optimistic as he gets. He still wants us to return next week just to confirm things are still looking good, but if the numbers come back again like today’s, we can again look to spacing out the clinic visits.
We also received a surprise today in day treatment. We were prepared for Charlotte to receive her monthly Pentamadine and IVIG, but we were told on arrival that she no longer gets the IVIG since she’s 3 months post BMT. This is great as the Pentamadine only runs about an hour vs the IVIG running close to 2 hours. We have also been given the okay to discontinue her blood pressure medication (still have to check it 3 times per day) and we are told that we should be lowering her Cyclosplorine next week. Her magnesium levels were also awesome today so Amy is keeping her fingers crossed that we might be able to either lower or discontinue that supplement. It tastes so awful and it’s becoming more and more challenging to get Charlotte to drink it when mixed with a liquid. We both think she would be sooooo excited to actually drink milk again with nothing in it!!
Again, thank you for the wonderful thoughts and prayers. Happy 4th early everyone.
And…….he’s back! After approximately 9 months away from home, Broadway Joe (aka Bubba) is back home in Columbus. We decided it was time to be a complete family again. So this morning we drove to Jackson (something else we haven’t done since last Labor Day) to visit a bit with Gma and Gpa Wags and bring our “son” home. Charlotte was so excited to get Bubba. All day yesterday she kept pleading to go get him, but we had other plans for the day (see below). Her smile was so huge this morning when we finally told her we were leaving. We tried quizzing CJ about what she remembered about Jackson, but could tell she didn’t remember much. But the memories definitely came flying back once she was there because she instantly remembered what toys were there, the best spots to explore in the yard, and that she just simply loves visiting her grandparents. She immediately told Amy and me to “leave” (Molly was allowed to stay) so that she could play with Gma and Gpa herself. We also briefly said hi to Uncle Scott, Aunt Kim, and Cousin Brett outside their house. Again, it’s been way too long since CJ saw them last. She seemed a bit shy, but also gave them some smiles. There were definitely tears when we had to leave Jackson, but thankfully Broadway kept the ride home entertaining so CJ was quickly smiling once again. And Molly is showing her approval of having Bubba back too….she just smiles and screams at him. I would like to apologize to all of our neighbors and to those that walk, run or bike past our house, as Broadway will surely remind you all he is back too! I am sorry squirrels. Sorry bunnies. Sorry birds. Sorry Becky, Judy and Tom. Sorry to Tagger, Brewer, and Doug.
The red arrow in the upper left of the picture shows where CJ's room was for rounds 1 and 2. Click on the picture to enlarge.
As for Saturday, Amy and I got to check off one more promise kept to CJ. During Charlotte’s first two rounds of Chemo, her hospital room (click on the picture to the left) overlooked the Waisman Center that included their very large playground. Many times during the seven weeks she spent in that room, she would look out her window at the only thing worth looking at (unless you liked watching Madison Metro buses chug powerlessly up the hill, or a beat up old shed in some guy’s yard) and plead with Amy to go play. It just broke our hearts, especially since this part of life was so new to all of us, but Amy promised Charlotte that someday, somehow she would get to play in that playground. We never knew how we would do this as the playground is a part of their preschool….not open to the public. But about a month ago, we were contacted by the Waisman Center inviting Molly to participate in a research study about infants and language development. Normally, one would receive a book, T-shirt or $ for participating, but Amy declined those gifts and instead asked if we could let Charlotte play on the playground and they happily agreed. So while Molly volunteered for the study (she did great by the way), CJ and I had the entire playground to ourselves and she was thrilled. Honestly, CJ has no clue that her room overlooked this playground, but Amy and I do. So we know this particular promise kept means more to us than Charlotte, but she still had a fabulous time. So for being on isolation….we actually had quite a busy weekend. It was great!!!
Tuesday is again clinic day and Amy and I are cautiously optimistic that CJ’s numbers will be back on track. She is not showing any signs of fatigue, moodiness, or paleness (which a low hemoglobin count would cause). She has in fact been quite active, taking long walks both days this weekend. She is also not showing any symptoms of the possible autoimmune disorder Dr Diamond had us looking for. She’s been sleeping and eating great too. So please keep those fingers and toes crossed (and prayers too) that all will be good.
Just a quick update. As we may have mentioned in earlier posts, Amy and I truly believe that Dr DeSantes is an awesome doctor who cares deeply about CJ and all of his other patients. That being said, we have found that he can be pretty hard to read so we were unsure about what all of this meant. To ease our minds, last night Amy had emailed Dr Diamond to ask her opinion of the numbers this week. This morning she responded with more information about the other causes Dr DeSantes told us about. She also said “These changes do not suggest in any way a recurrence of leukemia.” So we feel better now. We hope that this week passes uneventfully and that next week the numbers tell us things are back on the up and up.
Thank you to everyone for your prayers and positive thoughts! We will let you know more when we do!
Today was clinic day. And it didn’t go quite the way Amy and I had hoped. Charlotte seemed plenty happy to be there, and her mood was very good. Dr DeSantes was very pleased with how she looked and how she has progressed so far even going so far as not wanting to see her but every few weeks. We lowered the dose of her blood pressure medicine and also were able to cut out her anti-fungal medicine we have been giving her for months. But her CBC numbers told a little different story. Her WBC was down to 3.8, her platelets at 288k, but the number that surprised us and the doctors was her hemoglobin level. It had dropped from 12.4 two weeks ago to 10.3 today.
According to Dr DeSantes, this could mean a number of things. It may be a fluke or mistake. It may be the result of the tapering of her steroids and cyclosporine. It might be some sort of auto immune deficiency issue. So Amy and I did someting we aren’t supposed to do and got a second opinion from Dr Google.com. And found that it could mean something much more serious for CJ- it could be a sign of the cancer coming back. We feel better knowing that Dr DeSantes must not have been too worried, because we are waiting until our clinic day next week to find out more. So we are praying that it turns out to be nothing, but it is going to be a long week for both of us.
After the clinic visit, we stopped up to the 4th floor and got to see one of two of CJ’s primary nurses, Tracy. Charlotte was absolutely thrilled to see her and they shared a couple heartwarming hugs in the hallway. We still have yet to see Katy (her other primary nurse), but we will keep stopping by, hoping to get lucky.
Today was a pretty damn good day. We celebrated Father’s day, but more importantly, we celebrated Charlotte making it to Day +100. This is another major milestone in transplant patients. After today, any graft vs host disease she may encounter will likely be classified as Chronic GVHD instead of the usually more severe Acute GVHD. The first 100 days are also usually when the most infections occur as well as any serious transplant related side effects. So simply making it to Day +100 is a pretty big deal, and we couldn’t be more proud of her and how far she has come.
This morning we decided to take CJ and Molly to the Disney Store outlet in the Dells to celebrate. Charlotte had such a great time walking through the store, picking out some new toys for herself! We did a little walking around and headed back home while the girls napped.
Tuesday Charlotte has another clinic day. We hope her numbers still look good. And we hope Dr DeSantes still feels he made the right decision having us come every two weeks. I know it is easier for us to feel a little more normal without going in every week, but it sure will feel nice to get confirmation again on how she is doing.
Although today is day 100, CJ will still be on isolation until at least September so we have to continue to be patient and content with our new “normal.” Since we are tapering her Cyclosplorine, every week that goes by from now on should hopefully be allowing her new baby immune system to grow and mature. Until then, we must keep her secluded most of the time, enforce her wearing a mask when in public, wash her hands like crazy, and continue to decline visits right now. We have to also continue to decline Charlotte her request for strawberries and blueberries (her absolute favorites). plums are back in the stores and since those can be peeled, they are now her current love.
Thank you again for all of the love, support, and prayers! We truly believe all of the prayers are a big reason for why we are where we are today. And thank you all for understanding our secluded life at this time. We miss you all so much!!
Again, I apologize for the lack of posts recently. It’s not because things aren’t great at home. Charlotte is acting like a normal three year old every day. She refuses to eat or drink like we want her to during the day. She gets sassy once in a while and doesn’t want to cooperate all the time. We are also trying to cut down on her nuk use. And that doesn’t make her thrilled. But she is an excellent and caring big sister to Molly, who is being all fussy and busy herself. She is ready to get up and moving around because she isn’t happy hanging out in more than one spot for 5 minutes. Molly will probably be our little mover and shaker when she gets older.
Tuesday is not a clinic day. That will be weird. Amy and I pray that she continues to get better and healthier with every less frequent visit. She shows no sign of slowing down at home, and we hope she has a great summer filled with walks and visits to the park. We took her shopping a couple of days this week and she was very good not touching things and wearing her mask all the time. So we hope we can continue to make life more normal for her.
Charlotte had her weekly clinic appointment this afternoon. Dr DeSantes was pleased with how she looked and he was happy to hear that yesterday she was done with the steroids! She also won’t be needing the phosphate tablets or the acid reducer each day so that is even less that we have to worry about getting in her. Today she was very cooperative with his exam, something she hasn’t done since before transplant, another sign of her getting off the steroids. She was also better with getting her port accessed. She still cried, but not nearly as hard and she recovered very quickly. She is still on small doses of cyclosporine and will likely be on that for another three months as it is tapered slowly. Dr DeSantes said she looks great and he won’t need to see her for another two weeks! She has two weeks off!!!! He even mentioned she may be starting monthly clinic appointments after only a few more of the biweekly ones!
Some of her CBC numbers looked a little low (her WBC was 4.2 and she had 2200 neutrophils), but her hemoglobin stayed around 12.4 and she had 306k platelets. Again, Amy and I are trying not to be concerned, because the nurse sure acted like they looked good!
No complaints from home yet. Charlotte is still doing pretty darn good here. She is not eating or drinking as much as she used to, but again with the decrease in steroids, I think a little of that is to be expected. We have just two days of oral steroids to go, and hopefully we can continue cutting back on the Cyclosporine shortly after that! She is getting more active each day. And Amy and I both agree that she must be feeling better-she is no longer just sitting back and taking her medicines any more. She is putting up more of a fight each time we try to get some in her.
Grandma and Grandpa Wags picked up this powerwheels jeep at a garage sale. CJ wasn’t too fond of it at first, but the other day she was happy to sit in it and drive around the yard a little bit. I thought it was pretty cool.
CJ Elske's blog 