Bye, Bye, TKI!
Monday was Xavier’s last day of Gleevec (TKI)! The very drug that he has been taking for more than a year now to bring his Chronic Myelogenous Leukemia (CML) down to almost undetectable! He was dancing around the room when we told him he did not have to swallow the yucky tasting pills anymore! What a love-hate relationship we all have had with this drug. The love part strongly out-ways the hate because it got our baby to the point we are today. The hate part just comes more or less with the side effects it had produced. It is still unknown by doctors if they are going to put us back on Gleevec after transplant as a maintenance chemo, but for right now, we are celebrating!
After a three day “break” from the doctor’s office, Tuesday started at SCCA for a long day of appointments. First a blood draw and then we met with the Child-Life Specialist who wanted to speak with John and I about talking to both kids about the big “life events” that are about to take place.
John and I both were a little hesitant about the meeting because while we have the upmost respect for this woman’s educated and experienced insight into speaking with kids, it’s something we needed to do on our own, and at the right time. Throughout the meeting she gave us a few very good talking points and was very understanding that we felt it best to talk to the boys at our own pace and in our own way. She agreed that because of Xavier’s age and how comfortable he is around doctors thus far, we really don’t need to say much. Just keep doing what we have been doing thus far… it’s been working. For Xavier’s big brother W who is 5 years old, that needed to be a conversation that must be handled more delicately.
We took some pointers from the specialist and in turn had a very productive conversation with Westin later on in the week. W is such a bright, kind, and very compassionate little boy. He truly is one of a kind. We sat down and I told him that Xavier’s blood is sick and that Mommy and Daddy are doing to be at the doctor with him for a while so they can get his blood all better. The first thing out of W’s mouth was, “I was thinking that his blood may be sick.” He was just so in tune with the whole conversation. He asked a few more questions like if Xavier was going to be getting a lot of chocolate milk and if he was going to be able to sit on the doctors round rolling chair. We have taught this boy well… We then let him know that he would have friends here staying with him while we were away. He quickly adapted to the idea but then as the message truly sunk in some more, he got a little sad. He then laid his head on my arm with tears in his eyes and said he was going to miss sleeping next to Xavier…
We ended the conversation with W on a positive note, I mean, he is going to be able to sleep in Mommy and Daddy’s bed AND be the Man of the house! We asked him casually just not to mention this to his brother right now. We don’t want to scare or confuse Xavier. Westin agreed. Then Xavier came outside and the first thing W said was, “Xavier, you are NOT going to the doctor.” LOVE LOVE LOVE my W!
So circling back to Tuesday’s meetings, after the Child-Life Specialist we met with the fantastic nurses on our team so we could go over more details of what to expect with transplant. We went through books of information and asked questions here and there. I’m just a tad jealous because John always gets praised by the doctors and nurses for his insightful questions… Well, I guess I would say I am very fortunate to have him there by my side asking the questions. Love you, babe!
We started to talk about the central line insertion and how Xavier would adapt. They then brought in a little baby doll with a central line in its chest and a feeding tube to explain it to Xavier. He asked some great questions and then started pretend administering medication with the syringes. It gave me mixed emotions seeing him playing with the doll. Happy that he thought it was pretty neat, but bummed that he would even have to know what a central line is. They then brought him in his own stuffed doggie with a line that he could take home and play with. The nurses are fantastic!
After all of the chit-chat, the meeting turned into a check-up for Xavier. He did great, per usual. The nurses then started in on cultures which are test that tell us if Xavier has anything weird or infections that would keep him in isolation at the hospital. It also just looks at things like the common cold. The way they test for this is swabs of the mouth and the rear end. Also, saline sprayed in the nose and swabs. All of this very uncomfortable testing… not a peep from Xavier. Nothing. He was completely compliant. Let’s be honest, way more than I would have been!
Wednesday brought us to Children’s Hospital for a quick dental exam. No sweat, he did great. Teeth look fantastic. We have been taking Xavier in for more frequent visits to his dentist in preparation for transplant. We talked with the dentist a bit about importance of mouth care throughout transplant. He was great which I am so glad because there is a lot of follow-up with the dentist post-transplant.
Thursday was the BIG day. All of the testing we have done over the past two weeks would tell us if Xavier is cleared for transplant. Simply said….
It’s a go!
The doctor went through all of the testing results. I was most anxious to hear about the heart because long-term use of Gleevec could cause cardiac effects. Heart looks fantastic, all primary organ functions all look great!! All of the cultures came back completely negative for anything including CMV. Neither of the boys carry CMV which is a huge win going into transplant. The doctors were amazed how both boys were both so “clean” of things that a typical child would probably already carry. The doctor then went over last week’s bone marrow aspiration results.
Everything came back good, nothing to worry about. Gleevec had still been doing its job the last couple of months. We are not at undetectable, but that ok. The results do however have the doctors a bit baffled. The percentage of leukemia cells in his peripheral blood are higher than what is in his bone marrow where the cells are produced. They have never seen this before and the doctor admits that both she and other CML experts she has reached out to do not know why. But, the good news is that with all this said, this information is not going to steer us off course. In fact, she said that after consulting with other doctors, it basically confirms that we are moving in the best direction for our situation. There is no doubt that Xavier’s unique and rare case will be the topic of many CML discussion.
For us, bottom line, transplant is still the way to go.
Friday we went to the Physical and occupational therapist. It went great. Xavier had a blast doing all of the activities like throwing the ball, shooting hoops and jumping around. W was with us and was a bit envious of the fun his little brother was having. He got to join in on a few activities at the end and of course got a prize too. The therapist was surprised by Xavier’s core strength and said you just don’t see 3 year old with this much endurance, balance and strength. Yet another positive for us going into transplant. We of course will be followed by the physical therapist for years after transplant. No problem, it’s a great time!
Looking ahead, Monday we go into SCCA as the doctor just wants to get her eyes on Xavier one more time before being admitted to the hospital on Tuesday. If he has any signs of a cold, they would postpone the transplant. She has him on what she calls “lock-down” so he won’t catch anything. She knows how good we have been with keeping both boys some-what quarantined the past couple of weeks and she thanked us for being so diligent about doing so. While it may have been difficult to keep our distance, for those that understood how important this is and respected it completely and did not complain knowing that it would make it harder on John and myself, we are grateful.
I guess this would be a good time to thank, from the bottom of our hearts, all of our family, friends, friends of friends, wonderful neighbors and of course John’s work who truly jumped to action in order to help us find a resolution after losing the childcare we had lined up for Westin during this process. The selflessness of so many people is so truly inspiring. It is so comforting to know that we are surrounded by more love and support than we ever thought possible.
Having such a huge set-back like this at the beginning and very critical part of our journey was something we tried our very best to avoid. It has broken my heart this past week that so much of our energy has been going into anything other than focusing on our boys. Despite all this we are strong, focused, and taking one things at a time. The past is exactly that, the past. We are moving forward.
I can’t believe the next update will be from the hospital….