Transfusions and Mouth Sores


Hi all – our nurses came in at around midnight to take a blood sample from Sally. At 6am we were told that she needed to have platelet and blood transfusions that morning. A normal child’s platelet level is 150-200, hers dropped to 6 and her hemoglobin was at 7.0 which is the number you drop to that warrants a blood transfusion. So over the next few hours Sally received one after the other. The biggest challenge was keeping the IV lines out of her mouth, these apparently look quite tasty to a certain person in the picture above.

Sally was ravenous for food today, she was literally begging for it and attacking the spoon. At one point she was even pulling food off her bib and eating it as apparently Daddy wasn’t serving fast enough which was funny. What wasn’t funny was that with every bite, Sally would start to whine with increasing pain to the point where she was screaming while eating. The sores in her mouth are really having an effect on her. She still won’t take a bottle, Nicole resorted to spoon feeding her milk when she arrived this evening.

The nurses were giving Sally morphine every 4 hours, but decided to hook up a button that would allow us to give her a small dose every 15 minutes. We were going to test pressing the button right before she ate to see if it would help, however it malfunctioned so will have to try again tomorrow. If somebody wants to do something nice, please send the nurses on the pediatric floor (9th Floor, IN-PATIENT Pediatric Nursing Station) something nice, they take care of Sally as if she were their own and we know go out of their way for her from some of the stories we hear.

The rest of the day included a 3 hour nap that allowed Daddy to get some work done, and a lot of snuggling as you can see in the image below. Due to the low blood counts she didn’t have much energy and mostly just wanted to be held. I’m heading home for the evening to see the boys and then back to MSK at 7am so Nicole can head to work for the day.

Thanks again for all the comments here and on Facebook, they mean the world to us and we read each and every one of them. Please keep Sally in your thoughts and prayers.




15 Responses

  1. Kathy
    Kathy July 26, 2013 at 8:39 pm | | Reply

    Thanks so much for keeping us posted!

  2. Linda Belanich
    Linda Belanich July 26, 2013 at 8:44 pm | | Reply

    You guys are doing an amazing job. I love reading about Sally and you are a great writer. I cry and laugh through your posting and feel like I am really getting to know her. We would love to meet her one day. Sally is lucky to have such great parents. We pray everyday for Sally. May god continue to give you the strength to fight this. Again if you need anything we are here.

  3. Kristy
    Kristy July 26, 2013 at 9:01 pm | | Reply

    Matt, could you post the info for the floor/ address/ nurses station? 🙂

  4. Colleen Price
    Colleen Price July 26, 2013 at 9:14 pm | | Reply

    Dear Sweet Sally Sunshine…you and your family are lovingly in my thoughts and prayers. Love, Aunt Sarah’s friend, Colleen 😉

  5. Tracy Berg
    Tracy Berg July 27, 2013 at 12:11 am | | Reply

    I do not know you all personally, but I have been reading about your precious baby girl since day one. I have to say, she is the cutest thing! I hope and pray for a full recovery! Hopefully one day this will be a thing in the past for her! The pictures on here are darling. She is SO cute and what a sweetheart. No wonder all of the doctors and nurses adore her!!

  6. Mary
    Mary July 27, 2013 at 3:30 am | | Reply

    I’m so sorry you guys & your little baby have to go through such awful pain. If it means anything, I went to MSK for surgery of suspected cancer growth (it wasn’t cancer) and I couldn’t say enough about the hospital. I couldn’t have been treated better in ever sense of the word.

    I hope Sally beats the leukemia and pray for your family and the stress you are suffering. Again, so sorry you all have to go through such a horrible ordeal.

    With love & hope, Mary (transplanted Buffalonian, living in Hartsdale, NY)

  7. Grace Sapienza
    Grace Sapienza July 27, 2013 at 6:47 am | | Reply

    Great idea about the nurses! I have an appt for platelet donation in two weeks…I will be sure to bring them something special. They sure do deserve it! Prayers continue for you all….

  8. Barb Scrivano
    Barb Scrivano July 27, 2013 at 7:53 am | | Reply

    Seeing the picture of Nicole curled up in that bed with Sally choked me up and brought tears to my eyes. Seeing you in that bed, Matt? I actually smiled. You guys are in my thoughts every single day. God Bless the Kabel family.

  9. Helen Hentschel
    Helen Hentschel July 27, 2013 at 8:38 am | | Reply

    Hi Matt & Nicole , Praying for Sally , I hope that she had a good night and is feeling better this morning. My heart breaks for you God Bless .

  10. Marie
    Marie July 27, 2013 at 9:45 am | | Reply

    Thoughts and prayers for your special baby and your family. I am an adult who just beat leukemia. I had a stem cell transplant two years ago, my sister was my donor. Even though Sally is just a baby, I am relating to all of the issues you are posting. It is awful to know a small child is going through such a terrible illness/treatment – but you are in good hands and with God will get through this.
    Continued prayers each and every day for Sally and special prayers for you and your wife, your love and devotion is a gift..

  11. Lucille
    Lucille July 27, 2013 at 11:18 am | | Reply

    I read about Sally’s progress every day as you write. Sorry, I don’t write as often as I should. As you probably know, the chemotherapy medications that Sally is receiving are meant to hit different parts of the cell cycle ( remember the Krebs cycle from high school chemistry?)
    Each medication that she gets is meant to hit a different part of cell development to stop the bad cells from growing. The doctors know approximately when drugs will have peak responses such as how quickly the red blood cell, white blood cell and platelets will decrease after she receives her medication. It is tough watching and waiting, I am sure of that. We have to be positive that even though it is rough now, in the long run they want calm those bad cells down and to get her into remission as quickly as possible. This is what every one is praying for. The strength and perserverance that you as parents are giving her is monumental and the best medicine ever. Keep up the fantastic job that you are doing! Sally is so lucky to have loving and caring parents and family and friends.

  12. Sister Virginia
    Sister Virginia July 27, 2013 at 7:55 pm | | Reply

    So Sorry that Sally – and all of you – are having such a tough time. Hope the bed is big enough for your big heart, Matt. All the sisters join me in prayer. Hang tough!

  13. Michelle
    Michelle July 27, 2013 at 9:07 pm | | Reply

    Such a beautiful baby girl. My prayers go out to your family daily and I read your updates hoping that Sweet Sally is doing well. Love hearing your updates on your sweet girl. Will continue to pray daily.

  14. Marie Sidoti
    Marie Sidoti July 28, 2013 at 1:25 pm | | Reply

    Thank you for your updates…I love seeing her beautiful face…You are a Special Family and Sally is lucky to have you and Nicole as parents. You are always n my thoughts and Prayers and please know my offer to help with the boys is always open. Love to William!

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