Of course today being Mother’s Day brought many feelings as I continue to watch Caleb’s body fight to recover from this last round of chemo. We have spent the last couple days going to St. Jude to get his counts checked. They are still low, but are on the rise! We are still hopeful we will be able to start Cycle 5 this week.
On Friday a couple of important things happened. First, I was able to attend “Muffins with Mom” at Tyler’s school. His class sang a song to all the moms and we had muffins and fruit for breakfast. His class and the song was the cutest thing ever. I loved being able to be a part of it and I cherished every minute. Tyler was beaming the moment I walked in. He was so proud to have me there, and when it was over he cried because he didn’t want me to go. It was just all around so sweet and such a nice escape from the day to day.
After the event at Tyler’s school I went to St. Jude to take over being with Caleb so James could get back to work. He had a count check, and an audiology appointment. His counts are slowly coming up so we were happy about that, but the audiology appointment brought a little bit harder news. We knew that one of the chemo drugs he takes has an effect on hearing. It is the drug he can only get 4 cycles of because it can be so damaging to hearing. Up until this point his hearing loss was only in high frequency ranges, but after this 4th cycle they have started to see hearing loss down in the speech range. As the audiologist said “he took a pretty big hit this last round”. Now, that could be the cumulative effects of it all starting to show, or it could have been that 4th round, but either way it is being recommended that we get Caleb fitted for hearing aids. I choked back tears as I tried to ask all of the responsible questions I felt like I should ask about this. We have been told by both our doctor and the audiologists that it would probably come to this so we were prepared, but it still wasn’t an easy thing to hear or talk about.
So we have an appointment tomorrow (Monday) for Caleb to get fitted for hearing aids. They will take 2-3 weeks to come in, so that will give us plenty of time for him to get adjusted to them before we go home. Now, on a day to day basis we have not noticed any difference in Caleb’s hearing. However, as he moves on to being in a loud classroom full of students, and certain other situations where there is a lot of noise, then he may have trouble hearing. The audiologists at St. Jude are pros when it comes to helping kids adapt to them, and also explaining things to them. So she gave us a book to take home that explains in an easy way all that will be happening. He seemed open to the idea tonight, and was curious about learning more when we read the book. So we will see how tomorrow goes. The fun part is he gets to pick whatever color he wants for them. So hopefully we can make it fun and keep this a positive thing for him. I am trying not to look at it as a negative, but a positive in that it is just another tool that St. Jude is providing us to help him in the future. As he grows there are other hearing tools and systems that we can add to the hearing aids to help with amplification of certain things. But we will probably just start with the hearing aids and see how he does.
On Saturday we had another count check. His ANC is still on the rise, however his platelets were borderline for needing a transfusion. They left it up to us and we decided to go ahead and give him platelets to hopefully avoid having to get any transfusions today. So James and Caleb stayed at St. Jude to do that, and Tyler and I played at home. I once again don’t like having to be split up on the weekends, but we have no choice right now.
Today (Mother’s Day) I woke up to possibly the most boy things ever next to my bed… a coloring of a super hero villain done by Caleb in his favorite color green, and Tyler’s bug catcher. They were SO proud and excited to show me that they found a snail! I rolled over and saw the two things next to my bed. They came in and said “Happy Mother’s Day” and gave me hugs. It was the sweetest and I just laughed because being a boy mom is just like that… bugs next to your bed and sweet hugs because they have the biggest hearts.
We had to go to St. Jude for another count check. I was hoping Caleb’s counts would be up enough for it to be safe for him to go out in public and do something. I was hoping for maybe lunch out, or a movie. However, they aren’t quite there yet. His counts are still on the rise, and no transfusions were needed today, so at least that was good news and I’ll take that any day! We went home to play outside (thank goodness it was a nice day!). We also got some surprises from Grandma. She spoiled me with some mother’s day gifts and the boys got some new Lego sets which they tore open and began building immediately!
It was a good Mother’s Day, but definitely made me think about what we have been through and what is important. I would love to have had a Mother’s day like last year, where we all went to church together and then out for lunch. This year was very different. We really couldn’t do anything, and in this situation time and time again you just have to realize that being together is the most important and special thing you could have. Just having Caleb here with me after all we’ve been through is more than a Mother could ever ask for. Any mom would sacrifice things for their kids, put themselves last, and give their own life if they could take away pain from their child. I have sacrificed my career, the comfort of home, and some days my sanity to give Caleb (and Tyler) everything they need. I would do it all again in a heart beat. I hope we are home soon, but I will never forget the lessons that we learned here, especially about the importance of just being together. I hope when I look back on this Mother’s Day next year, when we are possibly at lunch or maybe another fun Mother’s Day activity, that I remember the simple times we had here when we had no other choice, because the simple moments are beautiful.
To end I’ll reiterate what I also posted on Facebook. I am so thankful for all the “moms” in my life and “grandmas and aunts” in my kids lives. They have an endless amount of people who love them, and we have a huge support system as well. We couldn’t do it without them! I could easily post thousands of pics of all the fun memories we’ve all had, but I came up with just a few of my favorites in honor of Mother’s Day.
I don’t know that there is ever a “good” time to hear that your precious child needs hearing aids, but I am thankful he made it to his 4th birthday before he suffered the loss, just for language and developmental milestones. I hope and pray it is minimal. Chemo is some mean stuff! I know how I would feel as Milo James’s grandmother. Thanks for posting. Wonderful pictures, as always.
Your church family is thinking of you and praying for y’all daily! Praying that Caleb adjusts to his new, colorful ears and his counts continue to rise! He is such a strong boy. He is so lucky to have such a great mom and supportive family! Happy Mother’s Day! <3
Dear Christina: May you feel God’s blessing on Mother’s Day and every day. You are my superhero for all that you have done for your children. I will continue to keep your family in my prayers.
Sweet sweet Christina, I sit & read all of ur post but don’t always respond. I would like to say how I admire u & all the family on ur strength & courage & positivity during this mountain u have had to climb. This has had to have been a very special Mother’s Day u will always remember. Always thinking of u & the family & prayers r always coming ur way. Still wearing my bracelet or maybe it’s ur bracelet. But either way still wearing. Love & prayers to all. 🙋💕💕💕💕🙏🙏🙏🙏🙏🙏
Your blogs are so heartfelt and so full of love. I will continue to pray for Caleb, you, and your family as you go through this season of your life. You are all Superheros. May God bless you all with a total recovery for Caleb. You are a wonderful example of the unbreakable bond a mother has for her child. We all love you at New Day Church and can’t wait for the day you return home for good.